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
>
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