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]

>

>

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