Re: Re:Carolyn and low ketones and seizures!

July 22, 2004

Carolyn - now that he is back in hosp, this is the time where you can ask

again (or demand) for your Drs there to ask for a second opinion on how they

are doing the diet. Hopkins would check blood ketones level, especially as

an inpatient, I'm sure they would, as well as perhaps urgent carnitine and

elctrolyte levels, and perhaps blood gases to make sure he is not acidotic.

I also think they should not be administering any more benzodiazepines

(clonazepam, valium etc) without having him hooked up to an EEG to clearly

see his seizure response. This can easily be done by IV admisitration and

you then wait 30-45 mins to see what happens on the EEG.

These medications can sedate muscles to an extent where they do not

actually spasm in a seizure response any longer, but 'underneath' they could

actually be making his seizures even worse. An easy test to do that may

answer a lot of questions for you.

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

Satnam and all the others so helpfull for me!

I come back from hospital but without aël.....He's bad and there

is no understanding so I'm desesperated and I want to believe in tha diet,

it's our last chance ! Yes it is, I don't want and I can't go further it's

too paintful for my little angel and for me too.

I'm separated from Nath's dad, we aren't very friends but for once he'll

stay at night becase I'm very tired , there's at least 3 months I didn't

sleep at all because Nath have too many seizures...

I'll tell you a little more later on if you're interested!!!!!

I'll try to sleep for a while and go back early tomorrow morning.

Doctors still don't really believe in that diet!

Nath's urinary ketones are better today but they don't want to check

blood levels ketones, they said they don't need to!!!!!!!!

Nath is under clonazepam again!They don't know diastat here!!!we have

valium intra rectal but not gel or suppository but liquid....is it the same

effect?

Thank you for beeing there

I hope Kristan is better, how is he doing with carnitor?

Lots of loves to all children

Carolyn , aël's mum

July 26, 2004

,

We are back home and nothing has been done at hospital!

No bllod ketones, no carnitine or gluose levels...not even more blood gases.

They did administrate him benzos and no eeg done!

They added trileptal 75 mg in the morning and 150mg in the evening, aël

's had a thrombopenia with tegretol and it's of the same drug family so we have

to look for the effects...but it doesn't seem to work neither, aël has

many seizures t c ones at night about 20 and they last long about 5 to 10 mn

each.

I don't know what to do , I cry a lot because of these seizures ! It's so

difficult with a multi disabled child already so with a lot of seizures without

sleeping it's awful but I love my son he's my life, I've only got him in my

life, I'm separeted and I had to stop work to look after Nath...Doctors don't

find out his disease, they said " unknown disease " but I can't believe he'll stay

like that convulsing all the time! His little heart will break before!and mine

too!

Thank for beeing there

Love to all children!

Carolyn, aël's mum 6 years old on 13 th of august!