Thanks Becky You described Addie's recent attack. I video taped it and the docs believed it was dystonia as well but b/c of the lip smacking and staring...
Hello, Christa is 31 now and has never really learned to add or subtract either on paper or in her head. If the numbers are small, (17 plus 6), she might work...
Karen, If Addie is on anti-seizure drugs, they can mask the dystonia or make it less severe. Jake was having these episodes while on phenobarb and it wasn't...
Thanks Bekky these are ones that we do refer to as Dystonic attacks - we didn't know what else to call them, and that is how they appear. It is good to hear...
To anyone who has used klonopin (clonazapam)....did your child have issues with behavior? Addie was recently put on this b/c she has extended dystonic attack...
Hi Karen, My daughter Kiley is 6 years old and is only on Flunarizine. We have seen behavior problems for the last year and a half or so. Kiley likes to do...
Karen, We used Lorazapam on Trevor when he was little and found that it wired him for 24 hours straight, no sleep a total nightmare for us. We use Diazapam...
This behavior started with her klonopin. However, we have seen this type of reaction also from other things like doubling her CoQ10 but not to the same...
To everyone who has a child with behavior problems, it sure is frustrating for all involved. My daughter will be 14 in January and she is really having...
yes this med is a behavior problem, I look at it this way and it took alot because one day i had the sweetest kid no behavior didn't cry or anything he always...
Hi Karen- I can't believe Addie is 8 years old - time has zoomed by. Sean has been on and off clonazapam before he was even diagnosed with AHC. We have kept...
Hi Karen, Joel takes Clonazepam prn. (as opposed to a daily dose). He too has moods/behaviour problems on the Clonazepam. It makes him very disagreeable, as...
Brenda that is a good description of Addie. I wonder about using it off/on vs daily. What dose do you use to break an attack? It has definately helped with...
Hi Karen, We tried to double Ian's clonazepam last summer because he wasn't sleeping well and instead of becoming drowsy, he became hyper and had difficulty...
Hi Karen Joel weighs approx 20kg and has just gone up to 0.9 mls (liquid) per dose. I have considered reqular dose rather than prn, however, worreid about it...
Im going to check with her dr about whether we are supposed to stay on long term or prn as you and others use it. thanks for the feedback...it always helps to...
Karen: David has been on many differeent drugs for behaviour and none of them have helped. I do beleive that behaviour issues are part and parcel of this...
I have read of some of the other children with poor communication and difficulties for others to understand them. I was just wandering if they have always...
Hi Brenda and Merry Christmas, From what I've read, there are many differences developmentally. Our child has never regressed but is learning very slowly....
Hi Karen, You mentioned a slide presentation put together by Josh Magleby. My daughter was evaluated by him in Boston, but I don't recall ever hearing any...
There is a summary about it from Josh in the July 2007 newsletter (pg 11) found on www.ahckids.org I don't know where I saw the slide presentation. I thought...
Goodmorning: Leslie has had multiple seizures lately and we are considering Keppra as an add on. Has anyone anything to report on the medication. Thanks ...
Lynda Burnham
lynda.burnham@...
Jan 7, 2008 12:54 pm
6312
Hi Lynda Sorry to hear of Leslie's seizure increase. Addie was put on Keppra at age 4yrs and they brought her seizures from 2-3 hrs in length down to 20-40min...
Hi all, Anyone out there with a girl who's either going thru or has been thru preteen-teen yrs that would talk with me over the phone about how they dealt with...
Keppra and B6 being taked about on another group so I am forwarding some more useful info. Karen Note: forwarded message attached. [Non-text portions of this...
Hi Lynda I forwarded some info on B6 to help w/possible behavior side effects of keppra. I just wanted to add that for Addie, the B6 revved her up and within 2...
Hello Karen: I am unable to pick up the infor on Keppra and B6. Would you please give be a brief. We are meeting with Dr. Andermann tomorrow and he wants to...
Lynda Burnham
lynda.burnham@...
Jan 8, 2008 2:39 am
6317
Lynda, My daughter Kristen went through the same thing years ago and we were offered Keppra and Zonegran. This was when they had just came out. We chose the...
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