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]