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ADHD behavior, and vanishing seizures

Hi I’m new here, looks like a great place for information. My 5 and a half year old daughter has had petite mal seizures since she was 3. She has been on Zarontin ever since. Her seizures have almost never been completely contained. It has seemed like every time we upped the dose, two or three weeks later they would start coming back. We have since almost settled on having them 90 percent contained because when her meds were at the level that the neurologist wanted, she had barely and appetite, and she was a zombie. Since she has developed this condition and been on medicine, she has become some what ADHD. Her behavior and mood can change like the weather. Our neurologist has been virtually no help it seems like. We are awaiting appointment with a new one and to consider seeing if there is a better medicine. A year ago her seizures seemed to vanish. I slowly reduced meds and no return in seizures. We never did get an EEG because about a month and a half later they started gradually appearing. At that time we were at less than half of normal dose of medicine with no signs of seizures and she was the easiest most pleasant child ever. She has been back on normal dosage of meds for a year now and the seizures have seemed to vanish again. We have not reduced meds but her behavior is getting worse.
The Zarontin seems to turn her into a tired zombie. She has trouble sleeping well. She can keep herself up until midnight and then wake up at 7 am ready to go.I hate feling like I make excuses for her behavior, At times as a parent it’s tough to know if your child is being a brat, or if it’s the side effect of the condition and medicine. Its tough to fit all of the information in this post so I have tried to keep it somewhat simple. Just wondering if anyone else has experienced similar issues. It seems that every person with epilepsy, while they may be grouped in a 'type' of epilepsy, have unique experiences that make almost every case to be different from the next.

Comments

Re: ADHD behavior, and vanishing seizures

I was diagnosed with simple and complex seizures (epilepsy) in October. I am 30 years old, but as a child and even in high school and college I often was accussed of having ADD or what is now usually called ADHD. Before my meds started working I would go days on end when I couldn't concentrate on simple tasks that I know how to do. I tell my wife and friends that sometimes I feel like I have a super-awful case of ADD, but I feel tired instead of hyper. I'm sure it's hard for a 5-year old to go through all of what she is with so little understanding of what really is going on. I can imagine how hard it must be to try to comfot her, but not let her use it as a crutch. Godd luck with that.

Clip

Re: ADHD behavior, and vanishing seizures

Having been in your shoes, I know how difficult it is to separate the medical condition effects, the medication effects, and effects of just being a child. There are some good links on this site, via the home site on epilepsy and behaviour;

http://www.epilepsy.com/epilepsy/social_thinking.html

that you may want to check out. There is also informatiion on Zarontin & other AED's available at http://www.epilepsy.com/epilepsy/medicine_available.html

You are right when you say that each person has unique experiences in treatment. My duaghter and i have both gone through many many AED's, and we react differently to most of them. If you have an epeleptologist available in your area (neuro specializing in epilepsy), it might be a good idea to try to get an appointment with one.

My best wishes for your son and your family,
Barbie

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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: ADHD behavior, and vanishing seizures

Hi Haileighs dad,
We've had quite a similar situation with our son. He had a handful of what we thought were febrile seizures. After a drop attack at age 6 we went to the neurologist. These seizures along with his developmental delay and an abnormal EEG caused him to be put on a low dose of Zonegran. We noticed an increase in his erratic behaviors. Sometimes an angel, other times he was uncontrollable. He also has dificulty sleeping. After about 3 hours of trying to get him to settle down to sleep, he may sleep for 1 1/2 hours and then wake with night terrors. We have to drag him out of bed to get ready for school in the morning. We don't know if these are seizures in his sleep or effects of his medicine. He was seizure free for about 18 months, then had 4 "breakthrough" seizures in the span of 1 month. The neuro had us increase his dose, but this has made his behaviors worse. We also don't know if the behavior is a symptom of his seizure disorder or the effects of his meds. Niether us nor the school know how to deal with these behaviors and we are worried about changing his meds because of othr side-effects.

Chip

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