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]

>

>

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