Re: Re: New to the group (Doose Syndrome)

[Guest guest]

Al,

Our daughter, age 7-3/4 yrs old was diagnosed with Doose Syndrome. After her

original diagnosis of Febrile Seizures, followed by Myclonic Epilepsy of Infancy

(even tho she was 3 when the seizures become more then febrile), then Lennox

Gastaut and lastly with Doose Syndrome. We were diagnosed in Feb of 1998 and

started the diet in June 1998 after failing 3 drugs.

I agree with , that the sooner you can start the diet the better. We were

on the diet for almost 3 years with immediate relief of myoclonic (drop

seizures). Grand Mals continued for a while on a 2 month pattern or when

weaning drugs. We never totally weaned Depakote. We went from 4.5 capsules

down to 1 capsule but we sat on 1 capsule for months and I just felt like she

was not doing as well as she was when she started the diet. After fighting my

husband, doctors and listening to the list, we traveled to St. Louis to have her

evaluated and had a 36 hour EEG. When she went to sleep her EEG was so erratic

that we had every nurse on the floor in our room asking if she was OK. That was

enough to convince everyone she needed the Depakote back. So we added 2 capsules

back and she has done well ever since. Her EEG improved drastically but she

still has spikes at night, none that you see.

We were able to wean off the diet 1 year ago and although we are on 4 capsules

(125mg) of Depakote, she has done well. Cognitively she is in regular School in

about the middle of her class (1st grade). She struggles with some things and I

think we have to work with her a little more then most but we are just so proud

of how well she has done. Her IQ testing shows she struggles most with

Non-Verbal skills and Spatial Orientation. We find that some things that most

kids know instinctively, we must teach her. But all in all she is holding her

own, praise God for that.

I also agree with in that the name of the game is seizure control. The

more control, the better the prognosis.

I would say that s Hopkins is one of the best places to start the diet as

they have alot of experience and can help more with fine tuning. That is where

we started the diet. We participated in the Study they are doing on kids with

myoclonic seizures and the diet. I think the study is still ongoing, so you may

ask them.

If you want my daughters complete story, let me know, I can attach the file to

an email. Or if you want to talk individually, feel free to email me directly.

JRiggs6118@... We are in southern INdiana, across the river from

Louisville, KY

Janet, a's mom

New to the group (Part II)

>

>

> > I forgot to mention what seems to be the scariest part of this

> > illness. Our doctor has told us that this condition has a 30%

chance

> > of leading to severe mental handicap or retardation and that

there is

> > a 50% chance that the seizures will never be controlled. Can

anyone

> > help me regarding these percentages?

> >

> > Obviously, we will love our son just as much regardless of his

> > handicap but I still want to do everything possible to try to

prevent

> > developmental delays.

> >

> > I have no idea if I am following the proper etiquette for this

message

> > board, as this is the first time I have ever posted to any message

> > board. I also apologize for the negative tone. I don't mean to

bring

> > anyone down and I am sure many of you reading this have problems

far

> > worse that ours but this is still new to me and I am having

trouble

> > dealing with it.

> >

> > Thanks again for your help.

> >

> > -Al

> >

> >

> >

> >

> > " The Ketogenic Diet....a realistic treatment option, NOT just a

last

> resort! "

> >

> > List is for parent to parent support only.

> > It is important to get medical advice from a

professional

> keto team!

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> >

> >