MELAS, phenobarbitol and vitamin therapy

July 9, 1999

Hello! I've read in several postings that UMDF has a newsletter is that is

sent out, but I've been unable to find a reference on the site regarding the

newsletter or how to sign up for it. I'd appreciate information on how to do

this.

Also, does anyone have experience or knowledge about the use of phenobarbitol

in adults with suspected mitochondrial disease (probably MELAS)? My son has

been sleeping excessively (20 hours a day) since being placed on it three

months ago. The doctor has said the excessive sleeping is due to cell repair

and is a reaction to the vitamin therapy (which was started at the same time

as the phenobarbitol). Yesterday, another doctor said he believes the

excessive sleeping is from the phenobarbitol, that in children it can cause

excitability, but in adults it produces the opposite effect. I'd like to

know if the excessive sleeping (as well as loss of ability to grasp things

with his hands, loss of ability to drink through a straw, etc.) could be

specific to phenobarbitol, if it's mitochondrial related, or if it could

possibly be a negative response to vitamin therapy.

Are strokes seen in MELAS the same types of strokes which occur in the

general population, with potential to cause the same types of damage (loss of

speech, loss of skills, etc.)?

Thanks for any information you can give this newcomer to mitochondrial

disorders.

Virginia - Mother of adult son (who also has autism), and adult daughter who

have recently received a probable diagnosis of MELAS (not confirmed, waiting

for results of gene testing)

July 11, 1999

Virginia:

My daughter had a confirmed diagnosis of MELAS. Phenobarb was the initial

med used to control her seizure activity, this was back in 1985. She

remained on Phenobarb for several years. Around 1990 her neurologist

contacted us and informed us that recent information indicated that

phenobarbital was not the drug of choice for patients with mitochondrial

illness. Barbiturates (phenobarb being one) should be avoided in several

published reports. Depakote is another anti-seizure medication that should

be avoided, several active members on the list can fill you in on this one.

Trying to find an alternative medication can be trial and error,

reacted differently with many of the older generation anti-seizure meds, some

had little or no effect on seizure control and other made her very lethargic.

The more recent drugs seemed to provide better seizure control and gave her

a better level of alertness, thus improving the quality of life, (lamictal

and nitrazapam (orphan drug) provided excellent control and improved

alertness).

July 11, 1999