Carolyn

[Guest guest]

Carolyn,

I am so sorry your little ael is having such a rough time.

Our little Tanner did well so far on the ketogenic diet but our next step if it

did not work would have been steroids which do work for some. He was also

doing Gamma Gobulin treatments. IVIG. The doctor said both the diet and the

IVIG treatments are aggresive treatments but now he is not going to have the

IVIG because the diet worked well for him so far.

Tanner was diagnosed as Landau Kleffner Syndrome which affects the speech. He

was unable to talk for about a month and was vomiting and unbalanced on his

feet. He is talking slowly again now because of the diet and has had no more

seizures. He was having lots of seizures before..

I know on the diet you have to watch every little thing. Even some of the meds

have carbohydrates and have to be changed to a different form..

I pray you will find an answer and ael will get better.

Love,

Hallie

Re: Re:Carolyn and Satnam check this out... low ketones

and seizures!

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