Re: New Doose article - and Al

[Guest guest]

Carolyn,

I sent you the article, forgot to mention - KGD was found in the article to

be the #1 treatment for Doose, followed by ACTH, then meds. Hope you're

reading this Al!!! Made me sooooooo happy we started the diet when we did,

and even more encouraged that our success so far (35 days seizure free!!!!)

may be " real " and not " beginners luck! "

Take care,

Chris

[Guest guest]

Question...the might sound dumb so hang with me...

What is DOOSE?????

[Guest guest]

,

I am no expert but basically Doose is a severe form of epilepsy

characterized by difficult to control seizures. Doose children

usually have myclonic jerks, drop attacks, generalized seziures and

staring spells. This syndrome can lead to developmental delays. It is

also called Myclonic Astatic Epilepsy of Early Childhood. It is

similar to Lennox Gestaut but a bit more mild. There more technical

inidcators such as a spike and wave EEG pattern but I don't know

enough to explain this end of it.

My son Luke was diagnosed with it about 2 months ago.

There are several folks on this board who can probably explain it

better.

Thanks.

-Al

> Question...the might sound dumb so hang with me...

>

> What is DOOSE?????

[Guest guest]

Thanks Al for the explanation. I have a hard time classifying what type(s) of

seizures that my daughter has but she has tuberous sclerosis (TS) so the type of

epilepsy seems irrelevant to me maybe. It seems they vary a little at times so

I've never been able to pin down a name. I only know that she has never had a

grand mal. It's wierd how they can diagnose someone with Doose when it sounds

very similar to the signs of TS although not diagnostic of TS (some people with

TS can have seizures and mental delays and no other signs which makes diagnosis

difficult). Neurological problems are tough to classify sometimes I think. I

have heard so many descriptions of different things on this message list. If it

weren't for the obvious genetic pattern in my family I would start to wonder if

we were dealing with TS at all! A person could drive themselves crazy trying to

understand it all. I do a good enough job with the little bit of knowledge I do

have!!!! :-)

[Guest guest]

Please forgive me. But, could I have that " Doose Article too " ? Thank you much.

Re: Re: New Doose article - and Al

Al, I sent it - let me know if you didn't get it - and I'll look forward to

your feedback!!

Chris

[Guest guest]

,

That made me laugh! It is an odd name, isn't it? Doose Epilepsy is also

called Myoclonic-Astatic Epilepsy of Childhood - Doose was the ??Dutch

neurologist who named the syndrome - basically it's an intractible seizure

disorder, typically striking around 2-6 yrs of age in children who are

neurologically normal prior to seizure onset. Multiple seizure types, but

predominantly characterized by a " massive " myoclonic jerk, immediately

followed by an atonic drop attack. Other seizure types include atypical

absence, gen. tonic-clonic, clonic, tonic. Characterized as one of the

" catastrophic " epilepsies. Some kids outgrow it, some have devastating

outcomes. Strong genetic component.

Ya learn something new every day!!

Chris

[Guest guest]

Yes please, rich.sue.hill@.... Thanks.

BTW, thinking much more along the lines of 'why' (again) these days, almost

positive digestive problems, allergies, metabolic 'processing' errors etc at

the root of all the evil, will keep in touch with what I find along my

'journey'.

Any food sensitivities, allergies etc involved with you guys? Familial auto

immune disorders?

Hill

New Doose article - and Al

> and Al (and anyone else with Doose!)

> A friend emailed me a new article on Doose - seems much more encouraging

than

> previous articles. I only got to look at it briefly last night, as one of

> the twins had fever and vomiting (PRAYING Allie doesn't get it) but it

looks

> pretty good. Let me know if you'd like me to email it to you privately( I

> know this list doesn't accept attachments anymore).

>

> Chris

> Oh - I didn't go ahead and email you both because I tried to send an

> attachment recently and the recipient's computer wouldn't open it - so I'm

> hoping I don't have a virus. If you don't have an anti-virus program,

I'll

> just send you the source (if I can figure it out - looks like it's maybe

en

> route to being published-??)

>

>

>

[Guest guest]

Sorry Al to have repeated your post almost word for word! I should read

ahead!!

Chris

[Guest guest]

I would like to see this article too please. Thanks

Jenn

cjmcshea@... wrote:

> Done! Love to hear your feedback after you get through it!!'

> Chris

>

>

>

[Guest guest]

Jenn,

Did anyone send you a copy?

Hill

Re: New Doose article - and Al

> I would like to see this article too please. Thanks

>

> Jenn

>

> cjmcshea@... wrote:

>

> > Done! Love to hear your feedback after you get through it!!'

> > Chris

> >

> >

> >