Re: New to the group (Doose Syndrome)

[Guest guest]

,

Thanks for the very encouraging note. I knew posting on this board

would be helpful. I have lots of questions, I hope you don't

mind.

I apologize for imposing but I need to do everything I can for my

son. He is everything to me. He is such a kind, bright, energetic,

happy little boy when he is feeling good and when he has bad days he

can barely walk and does not talk at all. I can't bear to think

that

the bad days will start outnumbering the good ones or, worse yet,

that we could eventually have only bad days.

Here goes…

1. It sounds like your son is doing very well, thank God. How is

he doing developmentally?

2. When you did the ACTH courses you mentioned infections. Did

this come while you were injecting ACTH or during the follow up phase

on oral steroids. We did two weeks of ACTH and have just finished the

first week of giving Luke Prednisolone orally, which he will be on

for three months. It seems to be working. Do you think it is

inevitable that the seizures will come back when the steroid

treatment is finished?

3. Unfortunately, our doctor did not say there was a 50% chance

that Luke would grow out of this. He pegged that chance at 10% -

20%. The 50% chance if for ever controlling the seizures. He feels

that there is a 50% chance that he will have frequent seizures for

the rest of his life.

4. You mentioned that there are others on this board with

children with Doose Syndrome. Do you have their email addresses? Are

their experiences similar to yours?

5. Our doctor feels we should try Zonogram as third medication

(in addition to Depakote and Keppra) before considering the Ketogenic

diet. I am not too optimistic that adding a 3rd drug will help

considering Luke has been through 6 or 7 already and none of them

seemed to help.

6. Where do you live? I understand that you may not want to give

a specific city but if you could tell me the general area it would

help b/c I am curious to see if we could compare notes on Doctors.

7. Lastly, can you recommend any books or other groups that

would be helpful. Also, where is the best place to go to begin the

diet? We are considering Columbia Presbyterian in New York (USA).

Thanks again for your help. I will say a prayer for your son.

Regards,

-Al

> Al,

> I will respond to both your posts together -

> First, our son (5 and a half) also has Doose Syndrome, there

are a

> few more on this list as well. He started seizing at 3 and a half,

initially

> diagnosed with Lennox Gastaut Syndrome - later changed when we

dsperately

> sought a 2nd (and 3rd) opinion.

> Doose is a horrible illness, but there are worse - as your Dr says,

there is

> a 50% chance the child will actually 'grow out of it' not many

intractable

> seizure disorders have this prognosis, most are lifelong, and

although the

> odds are not wonderful, they are great in the whole spectrum of

these type

> of disorders.

> Second, the mental retardation, yes, terrifying, but I am a firm

believer

> that with this diagnosis, unlike some others, that seizure control

has a

> huge bearing on the child's outcome. (This is my opinion based on

what

> little research I was able to find - others may differ). With some

seizure

> disorders, the process is ineveitable whether you attain control or

not.

> Third, we have also been down the ACTH track, worked very well, but

> infections at the end of each course brought the seizures back, the

immune

> system is lowered, has had 2 courses, this happened each

time.

> Fourth, the ketogenic diet has shown to be very effective with

Doose, the

> myoclonics etc are supposedly the easiest to control, and God, I

wish we

> were where you are now. To have the option of the diet 5 mths into

his

> illness, is so promising, we waited 20 mths, went thru' 8 AEDs, and

cried

> enough tears to fill the Pacific Ocean!

> 's drops stopped by day 5 of the diet, this has only ever

happened

> with steroids before, I could simply not believe it was happening.

We are

> still struggling with med toxicity, this happens frequently on the

diet, but

> the meds can definitely CAUSE seizures, do not let your Drs tell you

> otherwise. 's helmet has been in the 'dress up cupboard' for

the 7

> mths he has been on the diet, it comes out only when we do drug

reductions,

> or he becomes toxic or ill, and then goes away again.

> He still has some night seizures, these we are working on with med

> reductions and finetuning, our story is a long one (aren't they

all) and I

> won't 'overwhelm' you now, but please reply with any questions you

have, I

> will be happy to answer any.

> I repeat, you are so lucky, I know you probably don't feel it, but

I just

> know you must look further into the diet treatment rather than

steroids or

> AEDs. If it doesn't work, you can always go back to the other

treatment

> forms. This diet can in some cases in effect 'cure' your child, and

the

> earlier on in the disorder you try it, the better success you will

have, I

> am sure.

> Hill in NZ

>

> 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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> >

> >

> >

> >