Re: help wanted

[Guest guest]

Oh I felt so bad when I read about Sophie and her Mom. I would like to

tell her that our first few months on the diet was very rocky. The first two

weeks went well but after that we had problem after problem and seizure after

seizure. Did Sophie's Mom see any decrease in the seizures during the starvation

phase? because if she did then with fine tuning the diet will work better and

better.

I am so sorry she has waited 6 days for a response from the dietician. We had

alot of fine tuning with Kim's diet and still do and the diet is working better

and better for Kim in time but without the fine tuning the diet was not working

great for us. I read you said Sophie had been on about 10 different drugs, tell

her Mom, Kim had been on every anticonvulsant on the market and we never got

control of her seizures, but with the diet and I will admit Kim will probably

never be totally drug free but we have weaned alot of medicine and have gotten

better seizure control then we have ever had, although not seizure-free but

going in the right direction. Alot of times pre-diet Kim was on 4

anticonvulsants at a time and at one time 5 for a short period.

You can give Sophie's Mom my e-mail address and I would be happy to talk with

her. Pamandkim7@...

I do understand why Sophie's Mom is feeling that way because I found the diet

very hard to do and hard to get a good mind set on the diet when Kim was having

alot of seizures, the diet is easier for me to to do when Kim is not having

seizures. When the seizures are greatly reduced there is a great incentive to

keep going on the diet but when we have alot of seizures and they go on and on,

it gets hard for me.

I can't imagine doing this diet with a dietician that takes 6 days to return a

call.

you know I have been lucky with that, very lucky. Dr. Bean and

have given me wonderful support with this diet and I really needed the support.

I wonder if Sophie's ketones have been consistent?

I felt very bad for Sophie's Mom when I read your post. She really needs help in

fine tuning the diet so she can see if the seizures become more controlled with

fine tuning. Kim's seizures definitely improved with fine tuning. What concerns

me though is she doesn't seem to have enough support from the dietician, maybe

she should call the doctor herself and not wait for the dietician to call the

doctor.

Pam

help wanted

Hi all-

I'd like to ask for a favor.....when Allie was hospitalized at Hopkins for

diet initiation, her roommate was a sweet little girl named Sophie, who's 2

years old and has infantile spasms. She's had seizures since she was 4

months old, and has been on 10 different meds with nothing resembling

success, including ACTH. She's non-verbal, non- mobile. Like many of you,

her mom had to fight to get her on the diet, and went to Hopkins against her

neurologists advice (they were told she was too young - they go to Univ. VA,

but live about 2 hrs away in rural VA). Her seizures decreased dramatically

with the fast, but since have come back. Her parents are wonderful people

who love her very much.

I've been emailing with Sophie's mom since discharge. She is so discouraged.

I've told her about the list, because I think you guys could REALLY help

her, but she's too overwhelmed. I've given her lots of " pep " talks and as

much encouragement as I can, but I think she feels she has hit a dead end, is

all alone, and I don't think much is keeping her going. She's said she just

doesn't see the point in continuing. She's working thru the dietician at

Hopkins, and I think has waited 6 DAYS for the dietician to speak with the

physician to find out if she " can " start to wean meds ( I told her I thought

that was unacceptable). They never suggested weaning to her - I did, based

on all of your experiences. I don't know what else to tell her, I've told

her that many hadn't had success until they were on the diet for 6 months,

etc, etc, etc., but she and I are on seperate playing fields - completely

different diagnoses, different response to diet, etc. I think she's ready to

call it quits, and really, they have no other options at this point - their

neurologist (at UVA) wants to go back to ACTH.

My request - if anyone out there has a story to tell about being on the diet

and struggling initially with little or no seizure control, then acheiving

some degree of success, whatever it was, and whatever your diagnosis - could

you post a synopsis and I'll forward it to her? Or if you have any advice

at all you could offer, I know she would appreciate it and I think it just

might keep her going. It would at least help her be able to suggest

something, and be able to try something, or feel like there's somewhere to

turn.

Quick stats for those diet experts to see if you spot any problems- she's 2,

weighs

25.4 lbs (no signif change w/ diet), is on 900 cals, 3:1 ratio. She's on

Zonegram 100mg in am and Depakote 100 mg twice a day. Not sure what ketones

are, but she's never mentioned probs keeping ketones up. She's very hungry -

wakes at night w/ growling stomach per mom. Pre-diet had 30-80 sz daily, on

diet has 25-50 daily. No other signif. medical problems.

I'm sure she'll join the list eventually, she seems very interested. Seem to

be a more quiet, private person who has had to become an aggressive,

outspoken person because of Sophie's seizures. She's 7-8 months pregnant,

and has 2 older daughters from a previous marriage (this one's a boy). This

is dad's 1st child (great dad).

Thank you SO MUCH,

Chris

[Guest guest]

Gee. . . here's my two cents. The diet can be very

empowering, but it also puts a lot of responsibility

on the parent to " do it right. " When you've seen what

meds have done and haven't done and when you've

experienced neuros speaking out of both sides of their

mouth and not really knowing what's wrong. . .I think

you need to get to a point where you realize this is

" your " child -- not " their " child. It's at that point

that you dig your heels in and fight. It's very

difficult.

We did not get immediate seizure control and I still

can't say we have 100% -- but we're darned close. It

took weaning meds, going through withdrawl seizures,

adding digestive enzymes and a few other " tweaks "

before we got where we are today. From the beginning

of the diet, I would ask the advice of the neuro and

dietician, discuss it with my husband, and then we'd

decide to do what we felt was right. If it weren't

for this list, though, we never would have made it.

Here's what I'd suggest. just posted that

survey -- perhaps seeing what people have to say would

be helpful to her. Send her the trouble-shooting

guide in the files. I was amazed at all that my

dietician had not told me (and probably didn't know).

Once I had that, I felt much more comfortable

essentially on my own. My dietician is good about

returning phone calls. ..but only works 3 days/week.

So, if I have a question on Friday, I was needing to

wait until Tuesday for an answer -- as we all know,

that can seem like an eternity. I know you've already

tried -- but I'd continue to encourage her to at least

give this list a try. Sometimes the mail is

overwhelming to me, too -- but she could also sign up

and just read mail at the site and look through the

files.

Nan, Sevi's Mom, who's not on much anymore, is the one

who told me about this list. . . she told me in the

beginning that you have to commit fully to 6 months --

don't even let the thought cross your mind that you

might quit until you've at least given it that long.

That was good advice -- because in the beginning,

there were countless times I would have quit. I'd say

if she did see an improvement after the fast that

there's a lot to point to for this diet working --

maybe not 100%, but it sounds like any control is

better than what she's gotten from where she's been.

One thing my dietician told me early on was that, even

if the diet didn't " work " at least we had a chance to

give her brain a rest from the meds during critical

periods of development.

Quick look at stats -- perhaps she needs to go up on

the ratio. Depakote is known for " screwing with the

diet " (maybe others can comment on that).

Hope this helps. Feel free to give her my e-mail

address: annarebecca85259@.... I'd be happy to

correspond with her privately. I'm 8 months pregnant,

too. . .so I know how overwhelmed she must feel. I'm

getting a little loopy right now thinking of managing

the diet while I'm in the hospital and after, too --

and I've been at this 1 1/2 years and in a whole

different place than she is. She's lucky to have you

being such a good friend to her.--D

__________________________________________________

[Guest guest]

So know this feeling, am now v good friends with someone I met in hospital,

child very similar to (same age etc), but with a LGS diagnosis. I

have tried to encourage her re the diet, but she won't entertain the

thought, and I don't want to push her. I actually did the same as you,

posted to this list (he has developed autism, and lost all verbal skills

now), so I could give her the replies. She still won't 'take away' his food,

the only pleasure she feels he has left in life. You can only do so much

though, huh?

Anyway,

-calories maybe a bit high (??) especially if not very active - not overly

confident however on cal calculations, struggling with 's correct

level too.

-maybe edge the ratio up a bit, keep going up if she starts to see

improvement

If she saw a big improvement with fasting, and then lost control with food

being introduced, probably something gone wonky calculation wise. She needs

help finetuning allright, I'm surprised Hopkins, with their reputation,

don't see that - especially in light of the improvement with fasting.

As you know, we got daytime control by day 5, but night still a problem

however. Meds may well be an issue with her, went toxic soon into the

diet, any suspicion of that?

Hill

help wanted

> Hi all-

> I'd like to ask for a favor.....when Allie was hospitalized at Hopkins for

> diet initiation, her roommate was a sweet little girl named Sophie, who's

2

> years old and has infantile spasms. She's had seizures since she was 4

> months old, and has been on 10 different meds with nothing resembling

> success, including ACTH. She's non-verbal, non- mobile. Like many of

you,

> her mom had to fight to get her on the diet, and went to Hopkins against

her

> neurologists advice (they were told she was too young - they go to Univ.

VA,

> but live about 2 hrs away in rural VA). Her seizures decreased

dramatically

> with the fast, but since have come back. Her parents are wonderful people

> who love her very much.

>

> I've been emailing with Sophie's mom since discharge. She is so

discouraged.

> I've told her about the list, because I think you guys could REALLY help

> her, but she's too overwhelmed. I've given her lots of " pep " talks and as

> much encouragement as I can, but I think she feels she has hit a dead end,

is

> all alone, and I don't think much is keeping her going. She's said she

just

> doesn't see the point in continuing. She's working thru the dietician at

> Hopkins, and I think has waited 6 DAYS for the dietician to speak with the

> physician to find out if she " can " start to wean meds ( I told her I

thought

> that was unacceptable). They never suggested weaning to her - I did,

based

> on all of your experiences. I don't know what else to tell her, I've told

> her that many hadn't had success until they were on the diet for 6 months,

> etc, etc, etc., but she and I are on seperate playing fields - completely

> different diagnoses, different response to diet, etc. I think she's ready

to

> call it quits, and really, they have no other options at this point -

their

> neurologist (at UVA) wants to go back to ACTH.

>

> My request - if anyone out there has a story to tell about being on the

diet

> and struggling initially with little or no seizure control, then acheiving

> some degree of success, whatever it was, and whatever your diagnosis -

could

> you post a synopsis and I'll forward it to her? Or if you have any

advice

> at all you could offer, I know she would appreciate it and I think it just

> might keep her going. It would at least help her be able to suggest

> something, and be able to try something, or feel like there's somewhere to

> turn.

>

> Quick stats for those diet experts to see if you spot any problems- she's

2,

> weighs

> 25.4 lbs (no signif change w/ diet), is on 900 cals, 3:1 ratio. She's on

> Zonegram 100mg in am and Depakote 100 mg twice a day. Not sure what

ketones

> are, but she's never mentioned probs keeping ketones up. She's very

hungry -

> wakes at night w/ growling stomach per mom. Pre-diet had 30-80 sz daily,

on

> diet has 25-50 daily. No other signif. medical problems.

>

> I'm sure she'll join the list eventually, she seems very interested. Seem

to

> be a more quiet, private person who has had to become an aggressive,

> outspoken person because of Sophie's seizures. She's 7-8 months pregnant,

> and has 2 older daughters from a previous marriage (this one's a boy).

This

> is dad's 1st child (great dad).

>

> Thank you SO MUCH,

> Chris

>

>

>