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



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