Subject: Phenobarbital

Jeanne wrote:

Just stay away from Tegretol and Phenobarbital (the latter has been related to actually increasing mental retardation).

Best wishes, Jeanne Seltzer

Hi Jeanne, I posted earlier today about the awful results Tegretol produced on Liselotte, and mentioned that she had first switched to depakene and now to Phenobarbital. I Searched through all the angelman letters in search for anything the group had to offer on Phenobarbital and came across your warning against Pheno. Do you (or anybody else who reads this) have some more information about the effect you ascribe to pheno? You surely understand that this makes me very worried, but I feel I need some facts before I face the neurologist, I am sure he won't change medication unless I have someting concrete.

Frank van Hof, father of Liselotte, 9 months, del+.

Subject: Re: Phenobarbital

Frank, my daughter Alyson(6 del+) is on Pheno. and has been for two years. she is also on Nirtazepam, and diamox. She has been on these meds. for two years,and it's been the best two years of her life!! My thoughts are try what you have to, to see what works. Alyson tried many many meds. before they were able to find something that worked. And I can honestly say I don't find her mentally impaired at all. Actually it's the opposite. She has made the most progress in these two years(walking,signing,toilet training,and socially). Every child is different, AS or not. what works for one does not have to work for others. Work with your Doctors to find out what is best for your child.

Good Luck!!!!!! My thoughts are with you Laura Good

Subject: Phenobarbital

Dear Frank,

My daughter Taylor (4.3, del +) is on Phenobarb for her seizures, as well as Depakene and Neurontin. After the Colorado conference, and after speaking with Dr. Hutchinson, he did recommend trying to get Taylor off of that drug. At the time she was on just Phenobarb and Neurontin. She had taken Dilantin initially for the seizures but developed some liver problems so was switched to Phenobarb. In October of last year our neurologist agreed and we weaned her off of the Phenobarb and started the Depakene. For the first few days she was fine. But she then started having almost continual seizures - so many drop seizures that she couldn't be left alone for even a minute. She was hitting her head on tables and falling to the floor. She had tonic-clonic seizures, which she had never had before. She was hospitalized and a 24 hour video/EEG was done. The neurologist said that her brain was having continual seizure activity. He recommended the Ketogenic Diet at that point because the drugs weren't working. He put her back on the Phenobarb, along with the other two drugs and the seizures stopped. She hasn't had a seizure since Dec., even with a high fever. We hate having her on so much medicine but she is functional while on it. As a matter of fact, she has progressed while on it. Eventually we would like to get her off of the Phenobarb, because of the side effects, but for now she is going to continue with what she's on. It's like the lesser of two evils - at least now she is able to play and make progress. Is there anyone out there who uses Neurontin? Our neurologist had wanted to try and wean her off everything but the Neurontin. We haven't heard much about it, however did read one article in Exceptional Parent about it.

Thanks, Robbin Clark

Subject: re: Phenobarbital

Frank,

First hand, before Ben was diagnosed with AS, at around 9 months, when he first started having grand mal seizures, he was put on Phenobarbital. It made him a different child -- very lethargic, so I protested and he was weaned off...we then tried Tegretol, which made things even worse of course, but we finally landed on Depakene (Valproic Acid), which worked for a couple of years until he got Pancreatitis...we've been on Klonopin since...

Anyway, the next time I heard of Phenobarbital was at an Angelman Conference 3 years ago in Florida. Dr. Terry Hutchinson (a neurologist now on the Angelman Board I believe) spoke out against it...he basically advised parents to get their kids off it...he also spoke in Colorado this past summer and said the same. His # is 209-221-4501.

Also, there has been a lot of press on Phenobarbital and its lowering IQ. If you can access the Web, check out www.nih.gov/nichd/pheno.html.

Best wishes,

Jeanne Seltzer

Subject: Phenobarbital

I was reading the messages the other day and found where it said that phenobarbital has been related to actually increasing mental retardation. How true is this and how do you know if that happened? Coralynn was gives Penobarbital when she was first diagnosed with siezuresand we tried to get her off it ASAP but her pediatrition new best. I can't seem to recall just how long she was on it but if I compare (and I know I am not supposed to ) her to the other angels, I feel she is lagging pretty far behind most of them. Corinne

Subject: Re: Phenobarbital

Corinne, My daughter Emily (6, del+) was given phenobarb for just a couple of months when she first started having seizures -- she also is not as far along developmentally as a lot of the other angels I've seen or heard about.

LEt me know what you find out... Marianne Mosley

Subject: Re: Phenobarb

At 09:56 2-07-96 -0400, you wrote:

As suggested, I checked out the article posted by The Nat'l Inst. of Child Health and Human Development. That article pertained ONLY to the effects produced on two groups of now adult males whose mothers had been given pheno. and other barbiturates while those men were in utero. Again, as a nurse, I feel the need to set the record straight when inaccurate or misinformation is posted to this list.

I was in a panic too by that message to this group and also concluded that the web page referred to did not all lead to the conclusion that phenobarbital might lower the I.Q. of kids, the article's point was that pheno lowers the I.Q. of the unborn child. However, this fact in itself might be reason enough to look for more information on pheno and the effects it has on the mental condition of patients treated with it.

Frank van Hof, father of Liselotte, 9 months, del+.

Subject: re: Phenobarb

Deanna,

The most reputable source on Phenobarbitol that I and others on the list have cited is Dr. Terry Hutchinson, a neurologist who has spoken at several AS conferences and who is now on the Angelman Board. He has told parents if their children are on Phenobarbitol to get them off of it. I didn't have time to do an extensive search on the Web for other news articles pertaining to Phenobarbitol and its consequences on IQ; I only gave one as a pointer in that direction, but I have read other news articles on its "possible" consequences -- this means it "may" happen; it probably doesn't "always" happen (however, my feeling on this is why take a chance?)...

Like other things on the list, I can only speak from my experience...when I wrote on Phenobarbitol before I wrote because our AS child had a bad experience with it, and because Dr. Hutchinson (who I have heard speak several times) spoke out against it...It is sometimes hard online to convey that these are personal experiences with Phenobarbitol, not "professionally documented" (although I'm sure Dr. Hutchinson could dig up related material/studies, etc.) I only list these experiences because I can only wish there was a list like this when Ben was 9 months old, undiagnosed, and we were at the mercy of doctors I didn't know or didn't know not to trust (e.g., I had one neurologist tell me "seizures won't hurt him, call me back if he keeps having them every 10 minutes instead of every 20 minutes." Ben proceeded to go into status, a life-threatening condition, only I didn't realize it at the time) If we had known about Phenobarbitol, Tegretol, and their "possible" consequences, we could have prevented a lot of bad experiences for Ben and for us.

I diagnosed my own child from a "letter to the editor," so while I know we don't want to "spread bad information," I consider experiential information from parents to be more valid in many respects than documented medical "proof."

Best wishes,

Jeanne Seltzer

Subject: Chloral Hydrate & Phenobarbitol

Hi Everyone:

In reference to the letter from E Liddy re: flying she mentioned the unsuccessful use of chloral hydrate for sedation. When David was very young, doctors unsuccessfully used chloral hydrate to sedate him for EEG's. In his early teens it was given to help him sleep when he went to a respite care facility and didn't work. We discovered it made his hands swell and become red. His ears also got red and felt hot. We figured he was allergic to it and discontinued its use.

Chloral hydrate, phenobarb and Ritalin all made him very hyperactive when he was young and we no longer use these drugs for David.

Carolyn, Fred and David (28) Windbeck

Subject: Re: Chloral Hydrate & Phenobarbitol

When Katie A. was being diagnosed, the docs ordered Chl. Hydrate to sedate her for the brain scan, and even after doubling the dose, she was still wide awake! We ended up just waiting for her to fall into a natural sleep. When she had an MRI (very noisy) at CHOP (Phila.) they used IV Na Pentothal and that was very successful. All this was at a very small, 16-18 months of age! Deanna