Subject: Re: Seizures/Depakote

One precaution that I haven't made before: When giving Depakote Sprinkles, AVOID the use of carbonated beverages. There is some sort of interaction between the coating on the sprinkles (which protects the mouth and esophagus) and the carbonation-possibly dissolves the coating-which can lead to severe mouth and esophageal irritation. We do give soda to Katie, but nowhere near Depakote time.

Deanna

Subject: Seizures-Response to Alice and Deanna

Hi everyone:

We thought it important to mention that when we were at the conference in Colorado last year the most important thing we took home with us was:

That we should try to locate a neurologist who was acqainted with AS. The reason being that Angels have a much different EEG--(one of the bands is always active.) We got home and did just that by calling Doctors to see if they knew about AS and asking how many AS patients they had. We ended up with one who deals mostly with children. The most significant thing as a result was that David was placed on Depakote and we have never seen him so alert. Nor had we seen so much of his eyes as the lids seemed to always be half closed.

Also recommended at the Colorado conference was that an EEG be done while videotaping and also that seizure activity be videotaped so the Neurologist could see what was going on.

With regard to Alice's question as to whether David had ever been off of seizure medication. The answer is that he wasn't, however he was seizure free for five to seven years when he was in his late teens--early twenties. While on the medication he went into absence seizure status within the last year before being placed on depakote.

Carolyn and Fred Windbeck (David 28)

Subject: Re: Seizures-Response to Alice and Deanna

Carolyn & Fred, et. al.

What does absence seizure status look like? Continuous staring?

Regarding finding a neurologist familiar with AS, ours claims to be but he had Emily on Tegretol until the Colorado Springs conference. When I returned and told him what I had learned there he got very angry with me that I was listening to unscientific "gossip." I told him Dr. Hutchinson was a neurologist and was basing his advice on his own anecdotal observations. I insisted on weaning Emily off the Tegretol. He told me how to do it, but basically said I was on my own. She's been off the Tegretol since last December with no seizures. I tell this story because this is the second specialist (the first was a geneticist) who claimed to be informed and current on AS but who actually was not.

In fact, I'd love to get a new neurologist, but there are only two pediatric neurologists in town and the other one is worse. How strongly do those of you "out there" feel about having a pediatric neurologist?

Marianne (mom to Emily, 6, del+)

Subject: Re: Seizures-Response to Alice and Deanna

Hi Marianne and everyone:

This is a response to your question re: what absence seizures look like? In David's case it was like two eye blinks. We had them confirmed by having an EEG done while videotaping David. It was done at Children's Hospital in Wash. D. C. last year. (He has a pediatric neurologist that takes adult patients also. He is treating two other children with A.S.)

In the Winter 1996 ASF Newsletter Absence Seizures were described as: "consist of a loss of awareness without convulsive activity. They are often brief, less than ten seconds long, and may be accompanied by some automatic movements such as lip smacking or funbling with clothing. Typical absence seizures occurring in primary generalized absence epilepsy (petit mal epilepsy is an older term) may occur up to 200 times per day, although observers rarely report more than 20 per day. angelman kids often have atypical absence seizures. The seizures are often longer and may have more fumbling and picking movements than typical absence seizures."

They are hard to recognize but when the EEG was done while videotaping David they were occuring often enough that we only had to go through the procedure for about 2 hours while it was scheduled to run 6 to 8 hours.

Carolyn & Fred Windbeck (David)

Subject: Re: Seizures-Response to Alice and Deanna

Carolyn & Fred,

The last EEG Emily had showed a bunch of seizure spikes, but she was behaving normally. I wonder now if she was having absence seizures and we didn't know what they looked like. (She was still on Tegretol then.) She never seemed "out of it" and the neurologist didn't change her meds or anything else -- he said to treat based on what you observe rather than the EEG. It makes me wonder though if she's having some strange kind of absence seizure that's not easy to detect.

Marianne (Emily, 6, del+)

Subject: Re: Seizures-Response to Alice and Deanna

Jennie's pediatrician consults with neurologists when necessary for Jennie. Her seizures are pretty much under control and she does go in to our clinic for regular level checks. The neurologists we dealt with in our area were very arrogant. One left for lunch 5 minutes before my appointment. I live 45 minutes from his office, but traffic can be so unpredictable and we were late. Another had us waiting 2 hours so we just left. Another moved. Another spoke with such an accent, in a very soft voice and smelled like cigarette smoke. I sure hope we don't need to see one again some day! Janice Daley

Subject: Re: Seizures-Response to Alice and Deanna

Marianne, I feel pretty strongly about having a pediatric neurologist, but if none were available, I'd look for any neurologist who was open, responsive, and kept himself upto date at least on issues that were important to his current patient(s)-esp. my kid. Choice of physicians is important, probably more so than choice of speciality. Our primary pediatrician just recently died (57) of radiation induced leukemia, and I'm not especially enamored of the other two in the group, so I'm going to have to find a new one for Matt and Katie. A tough job!

Deanna

Subject: Re: Seizures-Response to Alice and Deanna

I was wondering if anyone knew how to get intouch with Dr. Hutchinson. Melanie's siezures are only slightly better and I was hoping maybe our doctor or nueroligist could talk to him.

Also they have added a new (not yet FDA aproved for children) drug called lamictal. Has anyone heard of this or had any experience with this drug.

Thanks,

Lisa Koch (mom of Melanie Del + age 3)

Subject: Lamictal

Hi Lisa,

My daughter is also on Lamictal. She had been seizure free since Christmas when suddenly her drop seizures began. The head neuologist at Children's Hospital in Vancouver (B.C. Canada) strongly recommended we add this drug to her daily does in order to control the drop seizures, she's also taking Clobazam. As she just started taking this new medication in June, and we haven't found the ideal dose yet. We haven't noticed any negative side effects yet, she still seems alert and as happy as ever. At this point she is taking 12 1/2 mg in am and 18mg in pm, I'm sure that will be increased again soon as we still see occasional drop seizures. At this time Shannon weighs approx 27 pounds and is 3 1/2 years old.

Good Luck to you,

Kathy Bromley

Subject: Lamictal

Hi Lisa,

Shannon has been taking the pill form of Lamictal. It come in 25mg pills, her dose right now is 1/2 a pill in the am and another 1/2 in the pm. I use a pill cutter and measure out the dose, then I put her med on a small bite of food and make sure ALL of it goes down, instead of back out. This system seems to be working for her. Shannon's still not real good with liquids so I think this is a better system for her. What size of a dose is Melanie on right now? They determined how much to give Shannon in relation to her weight, she's far from maximum dose right now.

Kathy Bromley

Subject: Re: Lamictal

Thanks for your response. Melanie has all the sudden done a complete turn around. She is only having about one or two seizures an hour compared to 2 or 3 in 10 minutes. The lamictal seems to be helping. Melanie is only getting a very low dosage. Do they have childrens dosages in Canada. Our pharmicist has to use adult pills and crush them and some how make a liquid.

We also reduced the amount of Depokote Mel is getting at night against our doctors advice, but she is sleeping at night and this helps all of us. It is so easy for a doctor to tell you what to do when they are not the ones up for 4 weeks straight and working 40 hrs a week. We also feel the depokote is what increased her seizure activity and the doctors say that is not possible. Before she started the depokote she was only having drop attackes and they where only once every week or so.

Hopefully we are on the right track.

Lisa koch ( mom to Melanie 3 del +)

Subject: Re: Lamictal

Kathy, Lisa,

What drug family is lamictal in? I've never heard of it.

Marianne (Emily, 6, del+)

Subject: Re: Seizures-Response to Alice and Deanna

Lisa, Sorry I can't find lamictil (sp?) in my drug books at home, but I will check in the latest editions the next time I go in to the office.

Deanna

Subject: Absence Seizures

Hi Marianne and Everyone:

This is in response to your question re: what absence seizures look like? In David's case it was like two eye blinks. We had them confirmed by having an EEG done while videotaping David. It was done at Children's Hospital in Wash. D. C. last year. (He has a pediatric neurologist that takes adult patients also. He is treating two other children with A.S.)

In the Winter 1996 ASF Newletter Absence Seizures were described as: "consist of a loss of awareness without convulsive activity. They are often brief, less than ten seconds long, and may be accompanied by some automatic movements such as lip smacking or fumbling with clothing. Typical absence seizures occurring in primary generalized absence epilepsy (petit mal epilepsy is an older term) may occur up to 200 times per day, although observers rarely report more than 20 per day. Agenlman kids often have atypical absence seizures. The seizures are often longer and may have more fumbling and picking movements than typical absence seizures."

They are hard to recognize but when the EEG was done while videotaping David, they were occurring often enough that we only had to go through the procedure for about 2 hours while it was scheduled to run 6 to 8 hours.

Carolyn and Fred Windbeck (David 28)