Hi all, I've been reading the recent posts and we've been dealing with

behavior issues for last year or so.  We are trying to sort out what is

behavior due to puberty beginning and "normal" bucking the

parents/acting out behavior and what could be Keppra.  As I've written

before, we put her on Keppra after a severe AHC attack that put her in

the hospital.  The neuro thought it might help  It's been 2 yrs since we

put her on it and still are not at max dose (been on 5.5ml 2 x day) but

decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

and see if it helps attacks.  If not we were going to take her off.

Wellllll, the behavior of hitting, kicking, yelling has come and gone

over the last year, but over last week has gotten bad.  She reacts badly

to every request of going to the bathroom to change pants (potty trained

now with peeing, not pooping) or stopping activity to go (even with

warning her in advance or if know she pooped).   It's like reactive

behavior of a 2-3 yr old.

My question, do you who have kids on Keppra think it's the Keppra,

puberty behavior, or what?  I know people have said their girls attacks

changed (hers are more frequent and the cycles are blurring together

with too many triggered attacks).  The anxiety is also over the

top.(which I've read can be a bad side effect of Keppra) If anyone would

like to share or be willing to talk over the phone, I'd appreciate it!

Heather, mom to Jocelyn (10 1/2 yrs)

hgates@...

Hi Heather,



Kiley is 8 yrs old and is not on Keppra.  I remember talking to Dr.

Silver about her behavior when she was 5 yrs old and it has steadily

gotten worse over the years.  So in our case it has nothing to do with

Keppra and I don't think puberty either due to the age it started.

Kiley is somewhat similar to Jocelyn with the potty training in that she

doesn't want to bother with it if she is playing or in the middle of

some other fun activity.  She definitely has trouble controlling the

poop as opposed to pee.  Also, we find that just before and during

episodes, she can't control the toileting.  We have an appointment with

Dr. Silver next week and another doctor at the end of the month

regarding the behavior.



Kelly



(mom to Kiley)







-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Heather

Sent: Wednesday, June 17, 2009 3:30 PM

To: afha@yahoogroups.com

Subject: [ahc] Keppra/behavior/prepuberty

















Hi all, I've been reading the recent posts and we've been dealing with

behavior issues for last year or so. We are trying to sort out what is

behavior due to puberty beginning and "normal" bucking the

parents/acting out behavior and what could be Keppra. As I've written

before, we put her on Keppra after a severe AHC attack that put her in

the hospital. The neuro thought it might help It's been 2 yrs since we

put her on it and still are not at max dose (been on 5.5ml 2 x day) but

decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

and see if it helps attacks. If not we were going to take her off.

Wellllll, the behavior of hitting, kicking, yelling has come and gone

over the last year, but over last week has gotten bad. She reacts badly

to every request of going to the bathroom to change pants (potty trained



now with peeing, not pooping) or stopping activity to go (even with

warning her in advance or if know she pooped). It's like reactive

behavior of a 2-3 yr old.

My question, do you who have kids on Keppra think it's the Keppra,

puberty behavior, or what? I know people have said their girls attacks

changed (hers are more frequent and the cycles are blurring together

with too many triggered attacks). The anxiety is also over the

top.(which I've read can be a bad side effect of Keppra) If anyone would



like to share or be willing to talk over the phone, I'd appreciate it!

Heather, mom to Jocelyn (10 1/2 yrs)

hgates@buckeye- <mailto:hgates%40buckeye-express.com> express.com











[Non-text portions of this message have been removed]

Are any of the children on Lorazepam or Ativan?? Abbie has been on it since she

was about 4 -- she is now 20.? She doesn't have any behavioural problems now,

but she could get pretty cranky when she was much younger.? We think that the

lorazepam helped.





-----Original Message-----

From: Kelly Andrasco <kelly_andrasco@...>

To: afha@yahoogroups.com

Sent: Wed, Jun 17, 2009 5:02 pm

Subject: RE: [ahc] Keppra/behavior/prepuberty

















Hi Heather,



Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.

Silver about her behavior when she was 5 yrs old and it has steadily

gotten worse over the years. So in our case it has nothing to do with

Keppra and I don't think puberty either due to the age it started.

Kiley is somewhat similar to Jocelyn with the potty training in that she

doesn't want to bother with it if she is playing or in the middle of

some other fun activity. She definitely has trouble controlling the

poop as opposed to pee. Also, we find that just before and during

episodes, she can't control the toileting. We have an appointment with

Dr. Silver next week and another doctor at the end of the month

regarding the behavior.



Kelly



(mom to Kiley)



-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Heather

Sent: Wednesday, June 17, 2009 3:30 PM

To: afha@yahoogroups.com

Subject: [ahc] Keppra/behavior/prepuberty



Hi all, I've been reading the recent posts and we've been dealing with

behavior issues for last year or so. We are trying to sort out what is

behavior due to puberty beginning and "normal" bucking the

parents/acting out behavior and what could be Keppra. As I've written

before, we put her on Keppra after a severe AHC attack that put her in

the hospital. The neuro thought it might help It's been 2 yrs since we

put her on it and still are not at max dose (been on 5.5ml 2 x day) but

decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

and see if it helps attacks. If not we were going to take her off.

Wellllll, the behavior of hitting, kicking, yelling has come and gone

over the last year, but over last week has gotten bad. She reacts badly

to every request of going to the bathroom to change pants (potty trained



now with peeing, not pooping) or stopping activity to go (even with

warning her in advance or if know she pooped). It's like reactive

behavior of a 2-3 yr old.

My question, do you who have kids on Keppra think it's the Keppra,

puberty behavior, or what? I know people have said their girls attacks

changed (hers are more frequent and the cycles are blurring together

with too many triggered attacks). The anxiety is also over the

top.(which I've read can be a bad side effect of Keppra) If anyone would



like to share or be willing to talk over the phone, I'd appreciate it!

Heather, mom to Jocelyn (10 1/2 yrs)

hgates@buckeye- <mailto:hgates%40buckeye-express.com> express.com



[Non-text portions of this message have been removed]

















[Non-text portions of this message have been removed]

Joce hasn't used ativan since Dx except last hospitalization.  When we

used to use it she would get agitated.  How much does Abbie take a day?

Does she have anxiety issues?

Heather



KathHurl@... wrote:

>

>

> Are any of the children on Lorazepam or Ativan?? Abbie has been on it

> since she was about 4 -- she is now 20.? She doesn't have any

> behavioural problems now, but she could get pretty cranky when she was

> much younger.? We think that the lorazepam helped.

>

> -----Original Message-----

> From: Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>>

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Sent: Wed, Jun 17, 2009 5:02 pm

> Subject: RE: [ahc] Keppra/behavior/prepuberty

>

> Hi Heather,

>

> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.

> Silver about her behavior when she was 5 yrs old and it has steadily

> gotten worse over the years. So in our case it has nothing to do with

> Keppra and I don't think puberty either due to the age it started.

> Kiley is somewhat similar to Jocelyn with the potty training in that she

> doesn't want to bother with it if she is playing or in the middle of

> some other fun activity. She definitely has trouble controlling the

> poop as opposed to pee. Also, we find that just before and during

> episodes, she can't control the toileting. We have an appointment with

> Dr. Silver next week and another doctor at the end of the month

> regarding the behavior.

>

> Kelly

>

> (mom to Kiley)

>

> -----Original Message-----

> From: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> [mailto:afha@yahoogroups.com <mailto:afha%40yahoogroups.com>] On Behalf Of

> Heather

> Sent: Wednesday, June 17, 2009 3:30 PM

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Subject: [ahc] Keppra/behavior/prepuberty

>

> Hi all, I've been reading the recent posts and we've been dealing with

> behavior issues for last year or so. We are trying to sort out what is

> behavior due to puberty beginning and "normal" bucking the

> parents/acting out behavior and what could be Keppra. As I've written

> before, we put her on Keppra after a severe AHC attack that put her in

> the hospital. The neuro thought it might help It's been 2 yrs since we

> put her on it and still are not at max dose (been on 5.5ml 2 x day) but

> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

> and see if it helps attacks. If not we were going to take her off.

> Wellllll, the behavior of hitting, kicking, yelling has come and gone

> over the last year, but over last week has gotten bad. She reacts badly

> to every request of going to the bathroom to change pants (potty trained

>

> now with peeing, not pooping) or stopping activity to go (even with

> warning her in advance or if know she pooped). It's like reactive

> behavior of a 2-3 yr old.

> My question, do you who have kids on Keppra think it's the Keppra,

> puberty behavior, or what? I know people have said their girls attacks

> changed (hers are more frequent and the cycles are blurring together

> with too many triggered attacks). The anxiety is also over the

> top.(which I've read can be a bad side effect of Keppra) If anyone would

>

> like to share or be willing to talk over the phone, I'd appreciate it!

> Heather, mom to Jocelyn (10 1/2 yrs)

> hgates@buckeye- <mailto:hgates%40buckeye-express.com> express.com

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

> ------------------------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00

>

>







[Non-text portions of this message have been removed]

Abbie takes .5 mg twice a day, which is a pretty low dose for a grown woman (she

is almost 20 years old now) -- but her neurologist has said that even in low

dosages it can be therapeutic.? She does not have any anxiety issues at all.?

She does not have any behavior issues.?





-----Original Message-----

From: Heather <hgates@...>

To: afha@yahoogroups.com

Sent: Thu, Jun 18, 2009 11:54 am

Subject: Re: [ahc] Keppra/behavior/prepuberty

















Joce hasn't used ativan since Dx except last hospitalization. When we

used to use it she would get agitated. How much does Abbie take a day?

Does she have anxiety issues?

Heather



KathHurl@... wrote:

>

>

> Are any of the children on Lorazepam or Ativan?? Abbie has been on it

> since she was about 4 -- she is now 20.? She doesn't have any

> behavioural problems now, but she could get pretty cranky when she was

> much younger.? We think that the lorazepam helped.

>

> -----Original Message-----

> From: Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>>

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Sent: Wed, Jun 17, 2009 5:02 pm

> Subject: RE: [ahc] Keppra/behavior/prepuberty

>

> Hi Heather,

>

> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.

> Silver about her behavior when she was 5 yrs old and it has steadily

> gotten worse over the years. So in our case it has nothing to do with

> Keppra and I don't think puberty either due to the age it started.

> Kiley is somewhat similar to Jocelyn with the potty training in that she

> doesn't want to bother with it if she is playing or in the middle of

> some other fun activity. She definitely has trouble controlling the

> poop as opposed to pee. Also, we find that just before and during

> episodes, she can't control the toileting. We have an appointment with

> Dr. Silver next week and another doctor at the end of the month

> regarding the behavior.

>

> Kelly

>

> (mom to Kiley)

>

> -----Original Message-----

> From: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> [mailto:afha@yahoogroups.com <mailto:afha%40yahoogroups.com>] On Behalf Of

> Heather

> Sent: Wednesday, June 17, 2009 3:30 PM

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Subject: [ahc] Keppra/behavior/prepuberty

>

> Hi all, I've been reading the recent posts and we've been dealing with

> behavior issues for last year or so. We are trying to sort out what is

> behavior due to puberty beginning and "normal" bucking the

> parents/acting out behavior and what could be Keppra. As I've written

> before, we put her on Keppra after a severe AHC attack that put her in

> the hospital. The neuro thought it might help It's been 2 yrs since we

> put her on it and still are not at max dose (been on 5.5ml 2 x day) but

> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

> and see if it helps attacks. If not we were going to take her off.

> Wellllll, the behavior of hitting, kicking, yelling has come and gone

> over the last year, but over last week has gotten bad. She reacts badly

> to every request of going to the bathroom to change pants (potty trained

>

> now with peeing, not pooping) or stopping activity to go (even with

> warning her in advance or if know she pooped). It's like reactive

> behavior of a 2-3 yr old.

> My question, do you who have kids on Keppra think it's the Keppra,

> puberty behavior, or what? I know people have said their girls attacks

> changed (hers are more frequent and the cycles are blurring together

> with too many triggered attacks). The anxiety is also over the

> top.(which I've read can be a bad side effect of Keppra) If anyone would

>

> like to share or be willing to talk over the phone, I'd appreciate it!

> Heather, mom to Jocelyn (10 1/2 yrs)

> hgates@buckeye- <mailto:hgates%40buckeye-express.com> express.com

>

> [Non-text portions of this message have been removed]

>

> [Non-text portions of this message have been removed]

>

>

> ----------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00

>

>



[Non-text portions of this message have been removed]

















[Non-text portions of this message have been removed]

Hi Heather,



I am so glad you wrote.  This is EXACTLY what we are going through.  Addie has

been on Keppra since 4.5 yrs old.  We have always had to go up really slowly or

she tremors, fatigues, and got irritable.  However, over the last year it seems

instead of irritability she has real behavior problems at home and school

(darting out of class, sitting on mat and not participating or talking,

currenlty refusing to go to school or ride bus).  Her anxiety is also over the

top.  We are thinking about trying a med to help with her anxiety.  I think it

coincides with her development as well.  She has not had her period (she is 10

yrs next month) but is developing so those hormones have to be contributing. 

Her seizures have also picked up.  WIth that we have gone up and down on meds

b/c of seizures and then down b/c of side effect of behavior.  We are working

with a behaviorist to help as well (just beginning this). 



Interestingly, I keep bringing up the hormone piece and her neuro doesn't touch

it with a ten foot pole.  I wonder how long we have to go before we address it. 

I have heard of seizures increasing with menses and using the pill or another

drug to control or steady the hormones and hopefully control the seizures but

our neuro just had a blank stare when I mentioned this.



The behavior piece is so hard.  I had to add meds which are already risky but

her life and ours has turned upside down, not to mention the education she is

missing.  It sounds like there are several of us dealing with this new

behavior.  Addie was always much happier and passive.  As well, she is getting

fixated and OCD like at times (mostly in am) having to read every page of book

or color every page before stopping and saying 'I can't stop'. 



Keppra is known for what has been termed 'keppra rage'.  Behavior is a common

problem with Keppra. Go up (and if you get off of if) and down really slowly. 

You'll have better luck with the body adapting.  Also some have found that

taking b6 helps with mood and behavior side effects of b6.  Also better results

if started before keppra but others still see positives if started while on

keppra.  We tried b6 twice with Addie and both times it gave her significant eye

deviations and made her walk in circle after about 2 weeks of usage.  It also

really revved her up.  So for her it didn't work.



If you want to talk on phone feel free 978 369 1244.  Also, I downloaded Skype

and you can talk for free. 



I am so glad to hear someone else is going through this (wish you weren't) bc

last month has been really hard and very frustrating b/c the picture/triggers

just are clear with so many variables in play.



Karen and Addie



--- On Wed, 6/17/09, Kelly Andrasco <kelly_andrasco@...> wrote:



From: Kelly Andrasco <kelly_andrasco@...>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Wednesday, June 17, 2009, 5:02 PM



































       Hi Heather,







Kiley is 8 yrs old and is not on Keppra.  I remember talking to Dr.



Silver about her behavior when she was 5 yrs old and it has steadily



gotten worse over the years.  So in our case it has nothing to do with



Keppra and I don't think puberty either due to the age it started.



Kiley is somewhat similar to Jocelyn with the potty training in that she



doesn't want to bother with it if she is playing or in the middle of



some other fun activity.  She definitely has trouble controlling the



poop as opposed to pee.  Also, we find that just before and during



episodes, she can't control the toileting.  We have an appointment with



Dr. Silver next week and another doctor at the end of the month



regarding the behavior.







Kelly







(mom to Kiley)







-----Original Message-----



From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of



Heather



Sent: Wednesday, June 17, 2009 3:30 PM



To: afha@yahoogroups. com



Subject: [ahc] Keppra/behavior/ prepuberty







Hi all, I've been reading the recent posts and we've been dealing with



behavior issues for last year or so. We are trying to sort out what is



behavior due to puberty beginning and "normal" bucking the



parents/acting out behavior and what could be Keppra. As I've written



before, we put her on Keppra after a severe AHC attack that put her in



the hospital. The neuro thought it might help It's been 2 yrs since we



put her on it and still are not at max dose (been on 5.5ml 2 x day) but



decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday



and see if it helps attacks. If not we were going to take her off.



Wellllll, the behavior of hitting, kicking, yelling has come and gone



over the last year, but over last week has gotten bad. She reacts badly



to every request of going to the bathroom to change pants (potty trained







now with peeing, not pooping) or stopping activity to go (even with



warning her in advance or if know she pooped). It's like reactive



behavior of a 2-3 yr old.



My question, do you who have kids on Keppra think it's the Keppra,



puberty behavior, or what? I know people have said their girls attacks



changed (hers are more frequent and the cycles are blurring together



with too many triggered attacks). The anxiety is also over the



top.(which I've read can be a bad side effect of Keppra) If anyone would







like to share or be willing to talk over the phone, I'd appreciate it!



Heather, mom to Jocelyn (10 1/2 yrs)



hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com







[Non-text portions of this message have been removed]

























































[Non-text portions of this message have been removed]

Kelly, Joce finally has been peeing consistently on the potty for over a

year, but it wasn't until few months ago she could feel when she had to

go and tell (interestingly she only tells me when we are out, not at

home which is good).  She can poop on thepot but I think part of hers is

constipation becasue odf attacks and formula only diet (some foods, but

only about .05% of her daily intake LOL).  She even  wants to pee on the

pot during hemis and full body attacks if able.

We just had an app. with her neuro and he said she is just at the

beginning of an age to be able to benefit from seeing a child psych. for

anxiety/behavior.  How on earth do you find one that can understand your

child's speech, not have triggers from lighting, their office

environment, etc.  We are going to start looking but not too hopeful.

Let me know what Dr. Silver says.  Also, have you read the journal

article about aripiprazole?  It was in Dev Med Child Neuro 2009?  It was

used in an AHC girl (14 yrs old) in UK.  We may try that after we decide

whether to stay on Keppra or after wean off Keppra.  Our neuro read the

article and said they use it with kids with Tourette's (and Joce has

been having these "funks" we call them that look like tourette's (posted

that before).

Take care,

Heather



kcventi wrote:

>

>

> Hi Heather,

>

> I am so glad you wrote.  This is EXACTLY what we are going through.

> Addie has been on Keppra since 4.5 yrs old.  We have always had to go

> up really slowly or she tremors, fatigues, and got irritable.

> However, over the last year it seems instead of irritability she has

> real behavior problems at home and school (darting out of class,

> sitting on mat and not participating or talking, currenlty refusing to

> go to school or ride bus).  Her anxiety is also over the top.  We are

> thinking about trying a med to help with her anxiety.  I think it

> coincides with her development as well.  She has not had her period

> (she is 10 yrs next month) but is developing so those hormones have to

> be contributing.  Her seizures have also picked up.  WIth that we have

> gone up and down on meds b/c of seizures and then down b/c of side

> effect of behavior.  We are working with a behaviorist to help as well

> (just beginning this).

>

> Interestingly, I keep bringing up the hormone piece and her neuro

> doesn't touch it with a ten foot pole.  I wonder how long we have to

> go before we address it.  I have heard of seizures increasing with

> menses and using the pill or another drug to control or steady the

> hormones and hopefully control the seizures but our neuro just had a

> blank stare when I mentioned this.

>

> The behavior piece is so hard.  I had to add meds which are already

> risky but her life and ours has turned upside down, not to mention the

> education she is missing.  It sounds like there are several of us

> dealing with this new behavior.  Addie was always much happier and

> passive.  As well, she is getting fixated and OCD like at times

> (mostly in am) having to read every page of book or color every page

> before stopping and saying 'I can't stop'.

>

> Keppra is known for what has been termed 'keppra rage'.  Behavior is a

> common problem with Keppra. Go up (and if you get off of if) and down

> really slowly.  You'll have better luck with the body adapting.  Also

> some have found that taking b6 helps with mood and behavior side

> effects of b6.  Also better results if started before keppra but

> others still see positives if started while on keppra.  We tried b6

> twice with Addie and both times it gave her significant eye deviations

> and made her walk in circle after about 2 weeks of usage.  It also

> really revved her up.  So for her it didn't work.

>

> If you want to talk on phone feel free 978 369 1244.  Also, I

> downloaded Skype and you can talk for free.

>

> I am so glad to hear someone else is going through this (wish you

> weren't) bc last month has been really hard and very frustrating b/c

> the picture/triggers just are clear with so many variables in play.

>

> Karen and Addie

>

> --- On Wed, 6/17/09, Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>> wrote:

>

> From: Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>>

> Subject: RE: [ahc] Keppra/behavior/prepuberty

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Date: Wednesday, June 17, 2009, 5:02 PM

>

> Hi Heather,

>

> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.

>

> Silver about her behavior when she was 5 yrs old and it has steadily

>

> gotten worse over the years. So in our case it has nothing to do with

>

> Keppra and I don't think puberty either due to the age it started.

>

> Kiley is somewhat similar to Jocelyn with the potty training in that she

>

> doesn't want to bother with it if she is playing or in the middle of

>

> some other fun activity. She definitely has trouble controlling the

>

> poop as opposed to pee. Also, we find that just before and during

>

> episodes, she can't control the toileting. We have an appointment with

>

> Dr. Silver next week and another doctor at the end of the month

>

> regarding the behavior.

>

> Kelly

>

> (mom to Kiley)

>

> -----Original Message-----

>

> From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

>

> Heather

>

> Sent: Wednesday, June 17, 2009 3:30 PM

>

> To: afha@yahoogroups. com

>

> Subject: [ahc] Keppra/behavior/ prepuberty

>

> Hi all, I've been reading the recent posts and we've been dealing with

>

> behavior issues for last year or so. We are trying to sort out what is

>

> behavior due to puberty beginning and "normal" bucking the

>

> parents/acting out behavior and what could be Keppra. As I've written

>

> before, we put her on Keppra after a severe AHC attack that put her in

>

> the hospital. The neuro thought it might help It's been 2 yrs since we

>

> put her on it and still are not at max dose (been on 5.5ml 2 x day) but

>

> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

>

> and see if it helps attacks. If not we were going to take her off.

>

> Wellllll, the behavior of hitting, kicking, yelling has come and gone

>

> over the last year, but over last week has gotten bad. She reacts badly

>

> to every request of going to the bathroom to change pants (potty trained

>

> now with peeing, not pooping) or stopping activity to go (even with

>

> warning her in advance or if know she pooped). It's like reactive

>

> behavior of a 2-3 yr old.

>

> My question, do you who have kids on Keppra think it's the Keppra,

>

> puberty behavior, or what? I know people have said their girls attacks

>

> changed (hers are more frequent and the cycles are blurring together

>

> with too many triggered attacks). The anxiety is also over the

>

> top.(which I've read can be a bad side effect of Keppra) If anyone would

>

> like to share or be willing to talk over the phone, I'd appreciate it!

>

> Heather, mom to Jocelyn (10 1/2 yrs)

>

> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

>

> ------------------------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00

>

>







[Non-text portions of this message have been removed]

Karen, thanks for posting.  I'll give you a call sometime tonight if

that's okay (or if weekend is better let me know!).  Funny you mentioned

Skype.  I thought about that to talk to family and I mentioned it to

Ragga a while back.

Thanks, Heather



kcventi wrote:

>

>

> Hi Heather,

>

> I am so glad you wrote.  This is EXACTLY what we are going through.

> Addie has been on Keppra since 4.5 yrs old.  We have always had to go

> up really slowly or she tremors, fatigues, and got irritable.

> However, over the last year it seems instead of irritability she has

> real behavior problems at home and school (darting out of class,

> sitting on mat and not participating or talking, currenlty refusing to

> go to school or ride bus).  Her anxiety is also over the top.  We are

> thinking about trying a med to help with her anxiety.  I think it

> coincides with her development as well.  She has not had her period

> (she is 10 yrs next month) but is developing so those hormones have to

> be contributing.  Her seizures have also picked up.  WIth that we have

> gone up and down on meds b/c of seizures and then down b/c of side

> effect of behavior.  We are working with a behaviorist to help as well

> (just beginning this).

>

> Interestingly, I keep bringing up the hormone piece and her neuro

> doesn't touch it with a ten foot pole.  I wonder how long we have to

> go before we address it.  I have heard of seizures increasing with

> menses and using the pill or another drug to control or steady the

> hormones and hopefully control the seizures but our neuro just had a

> blank stare when I mentioned this.

>

> The behavior piece is so hard.  I had to add meds which are already

> risky but her life and ours has turned upside down, not to mention the

> education she is missing.  It sounds like there are several of us

> dealing with this new behavior.  Addie was always much happier and

> passive.  As well, she is getting fixated and OCD like at times

> (mostly in am) having to read every page of book or color every page

> before stopping and saying 'I can't stop'.

>

> Keppra is known for what has been termed 'keppra rage'.  Behavior is a

> common problem with Keppra. Go up (and if you get off of if) and down

> really slowly.  You'll have better luck with the body adapting.  Also

> some have found that taking b6 helps with mood and behavior side

> effects of b6.  Also better results if started before keppra but

> others still see positives if started while on keppra.  We tried b6

> twice with Addie and both times it gave her significant eye deviations

> and made her walk in circle after about 2 weeks of usage.  It also

> really revved her up.  So for her it didn't work.

>

> If you want to talk on phone feel free 978 369 1244.  Also, I

> downloaded Skype and you can talk for free.

>

> I am so glad to hear someone else is going through this (wish you

> weren't) bc last month has been really hard and very frustrating b/c

> the picture/triggers just are clear with so many variables in play.

>

> Karen and Addie

>

> --- On Wed, 6/17/09, Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>> wrote:

>

> From: Kelly Andrasco <kelly_andrasco@...

> <mailto:kelly_andrasco%40ameritech.net>>

> Subject: RE: [ahc] Keppra/behavior/prepuberty

> To: afha@yahoogroups.com <mailto:afha%40yahoogroups.com>

> Date: Wednesday, June 17, 2009, 5:02 PM

>

> Hi Heather,

>

> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.

>

> Silver about her behavior when she was 5 yrs old and it has steadily

>

> gotten worse over the years. So in our case it has nothing to do with

>

> Keppra and I don't think puberty either due to the age it started.

>

> Kiley is somewhat similar to Jocelyn with the potty training in that she

>

> doesn't want to bother with it if she is playing or in the middle of

>

> some other fun activity. She definitely has trouble controlling the

>

> poop as opposed to pee. Also, we find that just before and during

>

> episodes, she can't control the toileting. We have an appointment with

>

> Dr. Silver next week and another doctor at the end of the month

>

> regarding the behavior.

>

> Kelly

>

> (mom to Kiley)

>

> -----Original Message-----

>

> From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

>

> Heather

>

> Sent: Wednesday, June 17, 2009 3:30 PM

>

> To: afha@yahoogroups. com

>

> Subject: [ahc] Keppra/behavior/ prepuberty

>

> Hi all, I've been reading the recent posts and we've been dealing with

>

> behavior issues for last year or so. We are trying to sort out what is

>

> behavior due to puberty beginning and "normal" bucking the

>

> parents/acting out behavior and what could be Keppra. As I've written

>

> before, we put her on Keppra after a severe AHC attack that put her in

>

> the hospital. The neuro thought it might help It's been 2 yrs since we

>

> put her on it and still are not at max dose (been on 5.5ml 2 x day) but

>

> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday

>

> and see if it helps attacks. If not we were going to take her off.

>

> Wellllll, the behavior of hitting, kicking, yelling has come and gone

>

> over the last year, but over last week has gotten bad. She reacts badly

>

> to every request of going to the bathroom to change pants (potty trained

>

> now with peeing, not pooping) or stopping activity to go (even with

>

> warning her in advance or if know she pooped). It's like reactive

>

> behavior of a 2-3 yr old.

>

> My question, do you who have kids on Keppra think it's the Keppra,

>

> puberty behavior, or what? I know people have said their girls attacks

>

> changed (hers are more frequent and the cycles are blurring together

>

> with too many triggered attacks). The anxiety is also over the

>

> top.(which I've read can be a bad side effect of Keppra) If anyone would

>

> like to share or be willing to talk over the phone, I'd appreciate it!

>

> Heather, mom to Jocelyn (10 1/2 yrs)

>

> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

>

> ------------------------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00

>

>







[Non-text portions of this message have been removed]

When we've used valium or ativan, outside of a seizure, Addie gets very agitated

and revved up as well. 



Karen V.



--- On Thu, 6/18/09, KathHurl@... <KathHurl@...> wrote:



From: KathHurl@... <KathHurl@...>

Subject: Re: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Thursday, June 18, 2009, 10:31 PM



































       Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said that even

in low dosages it can be therapeutic. ? She does not have any anxiety issues at

all.? She does not have any behavior issues.?







-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty







Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather







KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>] On Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day) but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts badly



> to every request of going to the bathroom to change pants (potty trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00



>



>







[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

























































[Non-text portions of this message have been removed]

Hi all



We have had terrible experience with Aivan and it is a definately not the drug

for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having epilepsy

seizures. Every time Sunna had an episode we contacted her neurologist and we

rushed her to the Childrens Hospital. It was just a standard procedure to give

her Ativan, we just did not know what to do for her at those difficult times. It

was supposed to help her calm down, and finally get her to sleep but it worked

just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital walking her

around for up to 12 hours in our arms. She was hurting so much.

Sunna went through all the tests but it came negative, no epilepsy activity.....

Well the last time we tried Ativan was in April last year. Sunna had then been

diagnosed with AHC for 10 mo and she had been admitted to the hospital because

of the numerous episodes she had been having that day, it did not help her at

all. It was a 14 hour walk and we were exausted and so was Sunna with no rest.

Ativan is now hightlighted a NO drug to be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min and she

usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



 







________________________________

From: kcventi <kcventi@...>

To: afha@yahoogroups.com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/prepuberty











When we've used valium or ativan, outside of a seizure, Addie gets very agitated

and revved up as well. 



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown woman (she

is almost 20 years old now) -- but her neurologist has said that even in low

dosages it can be therapeutic. ? She does not have any anxiety issues at all.?

She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day) but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts badly



> to every request of going to the bathroom to change pants (potty trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]























[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga









________________________________

From: Siggi Jóhannesson <sunnavaldis@...>

To: afha@yahoogroups.com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/prepuberty











Hi all



We have had terrible experience with Aivan and it is a definately not the drug

for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having epilepsy

seizures. Every time Sunna had an episode we contacted her neurologist and we

rushed her to the Childrens Hospital. It was just a standard procedure to give

her Ativan, we just did not know what to do for her at those difficult times. It

was supposed to help her calm down, and finally get her to sleep but it worked

just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital walking her

around for up to 12 hours in our arms. She was hurting so much.

Sunna went through all the tests but it came negative, no epilepsy activity....

.

Well the last time we tried Ativan was in April last year. Sunna had then been

diagnosed with AHC for 10 mo and she had been admitted to the hospital because

of the numerous episodes she had been having that day, it did not help her at

all. It was a 14 hour walk and we were exausted and so was Sunna with no rest.

Ativan is now hightlighted a NO drug to be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min and she

usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



 



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very agitated

and revved up as well. 



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown woman (she

is almost 20 years old now) -- but her neurologist has said that even in low

dosages it can be therapeutic. ? She does not have any anxiety issues at all.?

She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day) but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts badly



> to every request of going to the bathroom to change pants (potty trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]

Hello to all of you.  I have been reading your post about behavior/prepuberty.

Kristen(15) did have issues in the beginning.  We had a few years of behavior

that I thought just might drive us crazy.  We fought this with school, going out

to church, out to eat.  Anything that  we wanted to do as a family.  She hit,

bit, kicked, would physically beat us up.  After years of losing this battle I

finally brought her to a psychiatrist.  I didn't want to add another drug to the

list she already was taking.  But when it got to the point where we couldn't

control her anymore I had to make the decision on what was best for her.  We

used several drugs(Zoloft,risperadol, abilify) we finally ended up with seroquel

and celexa.  Finally we found a combination that worked.  It took some time to

get her levels up, but when we did we saw a different child.  She was nice to

everyone, kind to her brother and sister,wantedtgo to school.  The staff there

ask us

  what we did with the old Kristen.  I tell you it was like day and nite.  There

are still some days when she acts up, but I have to remember that she is a

teenager.  There will be times where she gets cranky, but they are nothing like

before.  As most of you feel the same about more drugs, sometimes we have to

try, so that they can have some kind of normal life.  I often remind myself

imagine how she must feel.  Kristen was diagnosed with AHC when she was 6 months

old.  She developed epilepsy at age 3.  Her seizures are grand mal, and in the

beginning lasted up to two to three hours.  Now they are controlled with

Zonegran, Lamictal, Tranxene and flunarizine for AHC.  She also has a VNS

stimulator that made a world of difference with the seizures.  She takes the

depo shot for her menstrual cycles.

 

This journey is a tough one, and its not fair that our children have to struggle

with this every day, but I am thankful to have her no matter what lies ahead. 

Take care a keep searching for the answers!

 

Yvonne









From: Siggi Jóhannesson <sunnavaldis@...>

Subject: Re: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Monday, June 22, 2009, 8:12 AM

















Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not the drug

for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having epilepsy

seizures. Every time Sunna had an episode we contacted her neurologist and we

rushed her to the Childrens Hospital. It was just a standard procedure to give

her Ativan, we just did not know what to do for her at those difficult times. It

was supposed to help her calm down, and finally get her to sleep but it worked

just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital walking her

around for up to 12 hours in our arms. She was hurting so much.

Sunna went through all the tests but it came negative, no epilepsy activity....

.

Well the last time we tried Ativan was in April last year. Sunna had then been

diagnosed with AHC for 10 mo and she had been admitted to the hospital because

of the numerous episodes she had been having that day, it did not help her at

all. It was a 14 hour walk and we were exausted and so was Sunna with no rest.

Ativan is now hightlighted a NO drug to be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min and she

usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



 



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very agitated

and revved up as well. 



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown woman (she

is almost 20 years old now) -- but her neurologist has said that even in low

dosages it can be therapeutic. ? She does not have any anxiety issues at all.?

She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day) but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2 xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts badly



> to every request of going to the bathroom to change pants (potty trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date: 06/17/09

05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]







































[Non-text portions of this message have been removed]

Sylvia,



How did you know to try a different drug?  Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)







-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups.com

Subject: Re: [ahc] Keppra/behavior/prepuberty

















Hello to all of you.  I have been reading your post about

behavior/prepuberty. Kristen(15) did have issues in the beginning.  We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat.  Anything

that  we wanted to do as a family.  She hit, bit, kicked, would

physically beat us up.  After years of losing this battle I finally

brought her to a psychiatrist.  I didn't want to add another drug to the

list she already was taking.  But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her.  We used several drugs(Zoloft,risperadol, abilify) we finally

ended up with seroquel and celexa.  Finally we found a combination that

worked.  It took some time to get her levels up, but when we did we saw

a different child.  She was nice to everyone, kind to her brother and

sister,wantedtgo to school.  The staff there ask us

what we did with the old Kristen.  I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager.  There will be times where she gets cranky, but they

are nothing like before.  As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life.  I often remind myself imagine how she must feel.  Kristen was

diagnosed with AHC when she was 6 months old.  She developed epilepsy at

age 3.  Her seizures are grand mal, and in the beginning lasted up to

two to three hours.  Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC.  She also has a VNS stimulator that

made a world of difference with the seizures.  She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead.  Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis%40yahoo.com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland







____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was





> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Kelly,

 

The dr. is the one who suggested that we try something different.  When we would

start one we gave  it a couple weeks.  At first things would go well, then after

they reached a certain level the behavior would start again.  The dr. was very

good with knowing  which one to try.  When we explained what she was doing he

gave the options of the one's that he thought would work the best.  We started

the seroquel because she was so aggressive.  When we saw that this was working

for her we tackled the obsessive behavior with the celexa.  The side effects we

saw was the sleepiness.  Which after a few days she was fine.  The seroquel made

her eat more, but that was a good thing for her because she is so small, and

didn't want to eat.  It has made ours lives alot better.  She likes going more

now than before, and loves going to school.  At one time I had to fight her

every moring to go.

 

Hope this is helpful.

Sylvia





--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@...> wrote:





From: Kelly Andrasco <kelly_andrasco@...>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Thursday, June 25, 2009, 4:28 PM

















Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]







































[Non-text portions of this message have been removed]

Thank you, Sylvia.  We see the psych tomorrow.



Kelly







-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 10:09 AM

To: afha@yahoogroups.com

Subject: RE: [ahc] Keppra/behavior/prepuberty

















Kelly,



The dr. is the one who suggested that we try something different.  When

we would start one we gave  it a couple weeks.  At first things would go

well, then after they reached a certain level the behavior would start

again.  The dr. was very good with knowing  which one to try.  When we

explained what she was doing he gave the options of the one's that he

thought would work the best.  We started the seroquel because she was so

aggressive.  When we saw that this was working for her we tackled the

obsessive behavior with the celexa.  The side effects we saw was the

sleepiness.  Which after a few days she was fine.  The seroquel made her

eat more, but that was a good thing for her because she is so small, and

didn't want to eat.  It has made ours lives alot better.  She likes

going more now than before, and loves going to school.  At one time I

had to fight her every moring to go.



Hope this is helpful.

Sylvia



--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_andrasco%40ameritech.net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_andrasco%40ameritech.net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com

Date: Thursday, June 25, 2009, 4:28 PM



Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Kelly,

 

Good luck.  Does your child have issues with being compulsive?  Kristen would

pick her finger nails until they would fall off.  My advice would be to not

leave out any behavior that's going on.  The more information you give the

better.  Even if you think it's small.  Be patient, because it could take time. 

The waiting was hard, but the end results were great.  Also this may sound

strange, but talking to the psych help me alot. 

 

Sylvia



meritech.net> wrote:





From: Kelly Andrasco <kelly_andrasco@...>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Monday, June 29, 2009, 11:16 AM

















Thank you, Sylvia. We see the psych tomorrow.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 10:09 AM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



The dr. is the one who suggested that we try something different. When

we would start one we gave it a couple weeks. At first things would go

well, then after they reached a certain level the behavior would start

again. The dr. was very good with knowing which one to try. When we

explained what she was doing he gave the options of the one's that he

thought would work the best. We started the seroquel because she was so

aggressive. When we saw that this was working for her we tackled the

obsessive behavior with the celexa. The side effects we saw was the

sleepiness. Which after a few days she was fine. The seroquel made her

eat more, but that was a good thing for her because she is so small, and

didn't want to eat. It has made ours lives alot better. She likes

going more now than before, and loves going to school. At one time I

had to fight her every moring to go.



Hope this is helpful.

Sylvia



--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Thursday, June 25, 2009, 4:28 PM



Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]







































[Non-text portions of this message have been removed]

Sylvia,



I think she is more impulsive and she is obsessive, as in she won’t let

things go or get off of a topic/question, especially if things don’t go

her way.  I’m actually looking forward to going because I feel like help

is on the way.  I started asking her neuro about her behavior at age 5

and it has gotten worse over the years.  She is now 8.



Kelly







-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 12:48 PM

To: afha@yahoogroups.com

Subject: RE: [ahc] Keppra/behavior/prepuberty

















Kelly,



Good luck.  Does your child have issues with being compulsive?  Kristen

would pick her finger nails until they would fall off.  My advice would

be to not leave out any behavior that's going on.  The more information

you give the better.  Even if you think it's small.  Be patient, because

it could take time.  The waiting was hard, but the end results were

great.  Also this may sound strange, but talking to the psych help me

alot.



Sylvia



meritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_andrasco%40ameritech.net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com

Date: Monday, June 29, 2009, 11:16 AM



Thank you, Sylvia. We see the psych tomorrow.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 10:09 AM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



The dr. is the one who suggested that we try something different. When

we would start one we gave it a couple weeks. At first things would go

well, then after they reached a certain level the behavior would start

again. The dr. was very good with knowing which one to try. When we

explained what she was doing he gave the options of the one's that he

thought would work the best. We started the seroquel because she was so

aggressive. When we saw that this was working for her we tackled the

obsessive behavior with the celexa. The side effects we saw was the

sleepiness. Which after a few days she was fine. The seroquel made her

eat more, but that was a good thing for her because she is so small, and

didn't want to eat. It has made ours lives alot better. She likes

going more now than before, and loves going to school. At one time I

had to fight her every moring to go.



Hope this is helpful.

Sylvia



--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Thursday, June 25, 2009, 4:28 PM



Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Kelly,

 

Kristen is the same way.  But now with the meds she will give in faster than

before.  If I give her an answer that makes since she will now say ok and move

on.  Before we could spend hours trying to get her to stop asking the same

question.  With getting her way she is better also.  Before if she was

something and I said no the fight was on.  Now I can reason with her and she

will move on. 

 

Sylvia



--- On Mon, 6/29/09, Kelly Andrasco <kelly_andrasco@...> wrote:





From: Kelly Andrasco <kelly_andrasco@...>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups.com

Date: Monday, June 29, 2009, 4:17 PM

















Sylvia,



I think she is more impulsive and she is obsessive, as in she won’t let

things go or get off of a topic/question, especially if things don’t go

her way. I’m actually looking forward to going because I feel like help

is on the way. I started asking her neuro about her behavior at age 5

and it has gotten worse over the years. She is now 8.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 12:48 PM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



Good luck. Does your child have issues with being compulsive? Kristen

would pick her finger nails until they would fall off. My advice would

be to not leave out any behavior that's going on. The more information

you give the better. Even if you think it's small. Be patient, because

it could take time. The waiting was hard, but the end results were

great. Also this may sound strange, but talking to the psych help me

alot.



Sylvia



meritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 29, 2009, 11:16 AM



Thank you, Sylvia. We see the psych tomorrow.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 10:09 AM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



The dr. is the one who suggested that we try something different. When

we would start one we gave it a couple weeks. At first things would go

well, then after they reached a certain level the behavior would start

again. The dr. was very good with knowing which one to try. When we

explained what she was doing he gave the options of the one's that he

thought would work the best. We started the seroquel because she was so

aggressive. When we saw that this was working for her we tackled the

obsessive behavior with the celexa. The side effects we saw was the

sleepiness. Which after a few days she was fine. The seroquel made her

eat more, but that was a good thing for her because she is so small, and

didn't want to eat. It has made ours lives alot better. She likes

going more now than before, and loves going to school. At one time I

had to fight her every moring to go.



Hope this is helpful.

Sylvia



--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Thursday, June 25, 2009, 4:28 PM



Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]







































[Non-text portions of this message have been removed]

Has anyone used Trileptal for stablizing moods?  I know it is an

anti-epileptic drug, too.



-----Original Message-----

From: afha@yahoogroups.com [mailto:afha@yahoogroups.com] On Behalf Of

Sylvia Ockman

Sent: Wednesday, July 01, 2009 11:00 AM

To: afha@yahoogroups.com

Subject: RE: [ahc] Keppra/behavior/prepuberty











Kelly,



Kristen is the same way.  But now with the meds she will give in faster

than before.  If I give her an answer that makes since she will now say

ok and move on.  Before we could spend hours trying to get her to stop

asking the same question.  With getting her way she is better also.

Before if she was something and I said no the fight was on.  Now I can

reason with her and she will move on.



Sylvia



--- On Mon, 6/29/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_andrasco%40ameritech.net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_andrasco%40ameritech.net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/prepuberty

To: afha@yahoogroups. <mailto:afha%40yahoogroups.com> com

Date: Monday, June 29, 2009, 4:17 PM



Sylvia,



I think she is more impulsive and she is obsessive, as in she won’t let

things go or get off of a topic/question, especially if things don’t go

her way. I’m actually looking forward to going because I feel like help

is on the way. I started asking her neuro about her behavior at age 5

and it has gotten worse over the years. She is now 8.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 12:48 PM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



Good luck. Does your child have issues with being compulsive? Kristen

would pick her finger nails until they would fall off. My advice would

be to not leave out any behavior that's going on. The more information

you give the better. Even if you think it's small. Be patient, because

it could take time. The waiting was hard, but the end results were

great. Also this may sound strange, but talking to the psych help me

alot.



Sylvia



meritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 29, 2009, 11:16 AM



Thank you, Sylvia. We see the psych tomorrow.



Kelly



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Monday, June 29, 2009 10:09 AM

To: afha@yahoogroups. com

Subject: RE: [ahc] Keppra/behavior/ prepuberty



Kelly,



The dr. is the one who suggested that we try something different. When

we would start one we gave it a couple weeks. At first things would go

well, then after they reached a certain level the behavior would start

again. The dr. was very good with knowing which one to try. When we

explained what she was doing he gave the options of the one's that he

thought would work the best. We started the seroquel because she was so

aggressive. When we saw that this was working for her we tackled the

obsessive behavior with the celexa. The side effects we saw was the

sleepiness. Which after a few days she was fine. The seroquel made her

eat more, but that was a good thing for her because she is so small, and

didn't want to eat. It has made ours lives alot better. She likes

going more now than before, and loves going to school. At one time I

had to fight her every moring to go.



Hope this is helpful.

Sylvia



--- On Thu, 6/25/09, Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net> wrote:



From: Kelly Andrasco <kelly_andrasco@

<mailto:kelly_ andrasco% 40ameritech. net> ameritech.net>

Subject: RE: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Thursday, June 25, 2009, 4:28 PM



Sylvia,



How did you know to try a different drug? Was it that it had no effect

on her behavior, so you tried another?



Kelly



(Mom to Kiley, 8 yrs. old)



-----Original Message-----

From: afha@yahoogroups. com [mailto:afha@ yahoogroups. com] On Behalf Of

Sylvia Ockman

Sent: Thursday, June 25, 2009 10:07 AM

To: afha@yahoogroups. com

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hello to all of you. I have been reading your post about

behavior/prepuberty . Kristen(15) did have issues in the beginning. We

had a few years of behavior that I thought just might drive us crazy.

We fought this with school, going out to church, out to eat. Anything

that we wanted to do as a family. She hit, bit, kicked, would

physically beat us up. After years of losing this battle I finally

brought her to a psychiatrist. I didn't want to add another drug to the

list she already was taking. But when it got to the point where we

couldn't control her anymore I had to make the decision on what was best

for her. We used several drugs(Zoloft, risperadol, abilify) we finally

ended up with seroquel and celexa. Finally we found a combination that

worked. It took some time to get her levels up, but when we did we saw

a different child. She was nice to everyone, kind to her brother and

sister,wantedtgo to school. The staff there ask us

what we did with the old Kristen. I tell you it was like day and nite.

There are still some days when she acts up, but I have to remember that

she is a teenager. There will be times where she gets cranky, but they

are nothing like before. As most of you feel the same about more drugs,

sometimes we have to try, so that they can have some kind of normal

life. I often remind myself imagine how she must feel. Kristen was

diagnosed with AHC when she was 6 months old. She developed epilepsy at

age 3. Her seizures are grand mal, and in the beginning lasted up to

two to three hours. Now they are controlled with Zonegran, Lamictal,

Tranxene and flunarizine for AHC. She also has a VNS stimulator that

made a world of difference with the seizures. She takes the depo shot

for her menstrual cycles.



This journey is a tough one, and its not fair that our children have to

struggle with this every day, but I am thankful to have her no matter

what lies ahead. Take care a keep searching for the answers!



Yvonne



From: Siggi Jóhannesson <sunnavaldis@ <mailto:sunnavaldis %40yahoo. com>

yahoo.com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. <mailto:afha% 40yahoogroups. com> com

Date: Monday, June 22, 2009, 8:12 AM



Hi again



Just wanted to correct myself.

We do use Chloral, I wrote do not.



Thanks

Ragga



____________ _________ _________ __

From: Siggi Jóhannesson <sunnavaldis@ yahoo.com>

To: afha@yahoogroups. com

Sent: Monday, June 22, 2009 11:23:53 AM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



Hi all



We have had terrible experience with Aivan and it is a definately not

the drug for Sunna.

Before Sunna was diagnosed with AHC at 14 mo. she was thought having

epilepsy seizures. Every time Sunna had an episode we contacted her

neurologist and we rushed her to the Childrens Hospital. It was just a

standard procedure to give her Ativan, we just did not know what to do

for her at those difficult times. It was supposed to help her calm down,

and finally get her to sleep but it worked just the opposide for her.

She got VERY aggitated, cried sooo much and we were at the hospital

walking her around for up to 12 hours in our arms. She was hurting so

much.

Sunna went through all the tests but it came negative, no epilepsy

activity.... .

Well the last time we tried Ativan was in April last year. Sunna had

then been diagnosed with AHC for 10 mo and she had been admitted to the

hospital because of the numerous episodes she had been having that day,

it did not help her at all. It was a 14 hour walk and we were exausted

and so was Sunna with no rest. Ativan is now hightlighted a NO drug to

be used for Sunna, and will remain so.

What we use not is Chloral Hydrate, it gets her to sleep within 10 min

and she usually wakes up fine. We have this at home.



Take care

Ragga

Iceland



____________ _________ _________ __

From: kcventi <kcventi@verizon. net>

To: afha@yahoogroups. com

Sent: Friday, June 19, 2009 12:55:17 PM

Subject: Re: [ahc] Keppra/behavior/ prepuberty



When we've used valium or ativan, outside of a seizure, Addie gets very

agitated and revved up as well.



Karen V.



--- On Thu, 6/18/09, KathHurl@aol. com <KathHurl@aol. com> wrote:



From: KathHurl@aol. com <KathHurl@aol. com>

Subject: Re: [ahc] Keppra/behavior/ prepuberty

To: afha@yahoogroups. com

Date: Thursday, June 18, 2009, 10:31 PM



Abbie takes .5 mg twice a day, which is a pretty low dose for a grown

woman (she is almost 20 years old now) -- but her neurologist has said

that even in low dosages it can be therapeutic. ? She does not have any

anxiety issues at all.? She does not have any behavior issues.?



-----Original Message-----



From: Heather <hgates@buckeye- express.com>



To: afha@yahoogroups. com



Sent: Thu, Jun 18, 2009 11:54 am



Subject: Re: [ahc] Keppra/behavior/ prepuberty



Joce hasn't used ativan since Dx except last hospitalization. When we



used to use it she would get agitated. How much does Abbie take a day?



Does she have anxiety issues?



Heather



KathHurl@aol. com wrote:



>



>



> Are any of the children on Lorazepam or Ativan?? Abbie has been on it



> since she was about 4 -- she is now 20.? She doesn't have any



> behavioural problems now, but she could get pretty cranky when she was



> much younger.? We think that the lorazepam helped.



>



> -----Original Message-----



> From: Kelly Andrasco <kelly_andrasco@ ameritech. net



> <mailto:kelly_ andrasco% 40ameritech. net>>



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Sent: Wed, Jun 17, 2009 5:02 pm



> Subject: RE: [ahc] Keppra/behavior/ prepuberty



>



> Hi Heather,



>



> Kiley is 8 yrs old and is not on Keppra. I remember talking to Dr.



> Silver about her behavior when she was 5 yrs old and it has steadily



> gotten worse over the years. So in our case it has nothing to do with



> Keppra and I don't think puberty either due to the age it started.



> Kiley is somewhat similar to Jocelyn with the potty training in that

she



> doesn't want to bother with it if she is playing or in the middle of



> some other fun activity. She definitely has trouble controlling the



> poop as opposed to pee. Also, we find that just before and during



> episodes, she can't control the toileting. We have an appointment with



> Dr. Silver next week and another doctor at the end of the month



> regarding the behavior.



>



> Kelly



>



> (mom to Kiley)



>



> -----Original Message-----



> From: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> [mailto:afha@ yahoogroups. com <mailto:afha% 40yahoogroups. com>] On

Behalf Of



> Heather



> Sent: Wednesday, June 17, 2009 3:30 PM



> To: afha@yahoogroups. com <mailto:afha% 40yahoogroups. com>



> Subject: [ahc] Keppra/behavior/ prepuberty



>



> Hi all, I've been reading the recent posts and we've been dealing with



> behavior issues for last year or so. We are trying to sort out what is



> behavior due to puberty beginning and "normal" bucking the



> parents/acting out behavior and what could be Keppra. As I've written



> before, we put her on Keppra after a severe AHC attack that put her in



> the hospital. The neuro thought it might help It's been 2 yrs since we



> put her on it and still are not at max dose (been on 5.5ml 2 x day)

but



> decided to slowly up it (per Neuro plan) to full max dose of 9ml 2

xday



> and see if it helps attacks. If not we were going to take her off.



> Wellllll, the behavior of hitting, kicking, yelling has come and gone



> over the last year, but over last week has gotten bad. She reacts

badly



> to every request of going to the bathroom to change pants (potty

trained



>



> now with peeing, not pooping) or stopping activity to go (even with



> warning her in advance or if know she pooped). It's like reactive



> behavior of a 2-3 yr old.



> My question, do you who have kids on Keppra think it's the Keppra,



> puberty behavior, or what? I know people have said their girls attacks



> changed (hers are more frequent and the cycles are blurring together



> with too many triggered attacks). The anxiety is also over the



> top.(which I've read can be a bad side effect of Keppra) If anyone

would



>



> like to share or be willing to talk over the phone, I'd appreciate it!



> Heather, mom to Jocelyn (10 1/2 yrs)



> hgates@buckeye- <mailto:hgates% 40buckeye- express.com> express.com



>



> [Non-text portions of this message have been removed]



>



> [Non-text portions of this message have been removed]



>



>



> ------------ --------- --------- --------- --------- --------- -



>



>



> No virus found in this incoming message.



> Checked by AVG - www.avg.com



> Version: 8.5.339 / Virus Database: 270.12.76/2183 - Release Date:

06/17/09 05:53:00



>



>



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]















[Non-text portions of this message have been removed]