phenytoin, MAE etc -

[Guest guest]

Hi

Yes, 's diagnosis is Doose/MAE.

No, our neuro didn't tell us about phenytoin potentially aggravating MAE

seizures, was his first diagnosed case, and a lot of the info he

gleaned on the syndrome back then (in 2000) actually came for me sending it

on to him.

Phenytoin was trialled as an AED when was an inpatient soon after

his seizures first started, he got worse and worse and worse, (yes,

including increased myos) everyone said his condition was just deteriorating

on it's own, blah blah, as they do....until an EEG showed he was actually in

NCS with severely ataxic movements not all related to seizure activity. A

question mark about an adverse medication effect was finally raised, and in

the end we simply refused his dose one morning when no one was doing

anything about it.

He improved, and that was the end of that med for a while. Soon after that

I came across a paper on MAE (written by Olivier Dulac) where it does

actually spell out that phenytoin is a MAE no no, as are tegretol, phenobarb

and vigabatrin.

20/20 hindsight again, as tegretol and phenobarb had previously been

trialled and had worsened him as well.

Despite having the journal paper in writing by then, the phenytoin was

tried as an infusion some months later to try and break him out of minor

motor status, where of course he worsened again, and then even again in Nov

last yr in PICU when he was in tonic status - they said they had to use it,

as it was part of the hospital status 'protocol'. Grrr. Never again....

What diagnosis have you actually been given?

----- Original Message -----

>

> Hi ,

> I hope you don't mind me butting in here. But I was very interested

> in what you had said about Phenytoin aggravating 's syndrome

> (which I assume is Doose/MAE from what you said in your post???).

> My son does not have a diagnosis of this but he has a few of the

> characteristics and in my heart of hearts I trully believe the

> phenytoin he is still on with the diet is what is causing him to

> continue to have seizures. Before the diet he had only had TC's but

> one year into the diet (still on phenytoin) he started to have

> myoclonics. Did your neuro tell you this about the phenytoin or had

> you read it somewhere?

>

> You are really a wealth of information .

> Thanks,

>