Re: Back to square 1

August 24, 2001

Dianna,

I sure feel for you. I don't know what I'd do if my neuro gave me an

ultimatum like that! Do you generally trust him and feel he cares

about you and Nick? If you do, then maybe I'd give " his " way an

honest try. I gave my neuro/dietician's way an honest try, then

found this list, and gave them suggestions I learned here that we

could implement. They've been SO good about helping me calculate in

things to try. Sometimes I've had to wait quite awhile, but I know

they have Lucas' best interests at heart, so it makes it easier. If

you don't have a good relationship or trust this doc and dietician,

then maybe looking for someone a little more supportive of your input

is the answer. It sucks to be treated as an outsider and not part of

the keto TEAM when your opinions should be valued and respected.

After all, you're the one who sees what's going on, what's working

and isn't, and the one who has to live with the seizures. They get

to go home at the end of the day! I guess I'd say to follow your gut

instinct. But if you did give " their " way a shot, then you'd always

know you gave it a try, no matter what the result, and wouldn't have

to wonder " what if " if you went elsewhere and didn't achieve

control. And maybe they'd be more open to suggestions if their way

didn't do the trick? Maybe, just maybe, they'd learn something along

the way too! hahahehe

My thoughts are with you as you decide!

Heidi, mom to Lucas, 14 months, cerebral dysgenesis, cortical

dysplasia, hypotonia, ketofed since 9/00; Leah, 11 yrs., Laney, 6 yrs.

>My husband says I should do it their way for a predetermined

> amount of time and if it does not help our situation then switch to

a

> new neuro. I am wondering if I should set up something now for 8

> weeks somewhere else just in case. > Dianna

> mom to 18 months Keto diet since 6-5

August 24, 2001

I think I would do exactly what you mentioned..... set something up to at least get a consult with someone else..... you can always cancel if all is well. You're giving it a good shot to do it there way for a while..... then you will know you did the best you could with them. It makes me shake my head though, that they don't want you to talk to anyone else..... all the rest of us on this list. Sheesh. My dietician thinks it's great and loves it when I print out e-mails and bring them to her..... she feels all the information she can get is helpful to her and she's very encouraging of the support I get through everyone here.

Best of luck,

Patti, mom to Katera

Back to square 1

Maybe it is the weather, but we are having problems too. Part of it may be the stevia. I called the manufacturer and found out there is .02 carbs per 5 drops of stevia. Nick gets 8 drops per 8 ounces of water and drinks 3 bottles a day. that is 24 drops or .1 carbs. Then he drinks his rcf and oil with 3 drops of stevia with 5 meals a day so that is .06 carbs. I know that doesn't seem like much but he only gets 1 carb a day after his supplements and meds.(that is with 1.6 protein per kilo) Then I just found out there is cellulose in the diastat but I have yet to call the manufacturer for the specs on that. My dietitian and neuro are fed up with me talking to my internet group for advice. I now have a choice. I either follow all the dietitians suggestions- 2gr protein per kilo, Bugs Bunny vitamins, 4 meals a day and probably add back the klonopin ...or find a new doctor. My husband says I should do it their way for a predetermined amount of time and if it does not help our situation then switch to a new neuro. I am wondering if I should set up something now for 8 weeks somewhere else just in case. I could always cancel if we are doing better. I would also like an explaination of the doctors choices with his time expectations so we don't get forgotten and then they make new choices with new situations instead of looking at the whole picture. I really hate all this. I already had my good cry.Thanks for letting me vent.Dianna mom to 18 months Keto diet since 6-5

August 25, 2001

Dianna: I feel so bad for you- so hard to find a really good group to help you with this diet. I think you are wise to give this a try but plan ahead if this does not work out. Not to add to your load but the one thing that stood out from your email was the bugs bunny vitamins. I am so surprised that is what the neurologist is giving you - there are a lot of people that have problems with that vitamin. I am not sure who , but I remember someone from this list a while ago making the change from bugs bunny to a "pure vitamin" and seeing a huge drop in the number of seizures her child was having. I know my dietician has told me she had a patient go seizure free after dropping that vitamin and has never recomended it again. Hate to add to your struggle but did want to pass this on. Best of luck !

August 25, 2001

Dianna: I feel so bad for you- so hard to find a really good group to help you with this diet. I think you are wise to give this a try but plan ahead if this does not work out. Not to add to your load but the one thing that stood out from your email was the bugs bunny vitamins. I am so surprised that is what the neurologist is giving you - there are a lot of people that have problems with that vitamin. I am not sure who , but I remember someone from this list a while ago making the change from bugs bunny to a "pure vitamin" and seeing a huge drop in the number of seizures her child was having. I know my dietician has told me she had a patient go seizure free after dropping that vitamin and has never recomended it again. Hate to add to your struggle but did want to pass this on. Best of luck !

August 25, 2001

Dianna

Personally I'd be a bit wary of those who try to stifle communication

and the sharing of ideas. Perhaps they feel threatened, but why not listen

to other points of view and particularly to the experiences of others? Our

neuro was concerned when I asked her about something I'd read on the

internet, but to be fair she also credited me with the intelligence to not

go off assuming that everything I read was going to be suitable for my

child.

Our best resource is no longer just the medico's, but along with them we

now also have a world wide network of others who have " been there " . Why do

some of them not want to acknowledge that and use it too? I suspect that

they do not like to accept that which is not published as scientific/medical

fact in the appropriate journals, and the cynic in me also wonders about the

hold that drug companies have on those who prescribe and those who work with

them. Mmmmmm..!

Thats enough from my soap box for today.

Dianna, I think you are wise to consider another opinion and to set that

up in advance for when you've had enough of the current neuro. Planning

ahead never hurts and the appt can always be cancelled if things work out

okay before then. Push for explanations, written if possible, so that you

can have a reasonable idea of what treatment to expect and so that the

doctor is accountable.

I totally understand why you hate all this. You should be able to expect

better.

Hang in there chum

(Hannah's mum, Australia)

Back to square 1

> Maybe it is the weather, but we are having problems too. Part of it

> may be the stevia. I called the manufacturer and found out there is

> .02 carbs per 5 drops of stevia. Nick gets 8 drops per 8 ounces of

> water and drinks 3 bottles a day. that is 24 drops or .1 carbs. Then

> he drinks his rcf and oil with 3 drops of stevia with 5 meals a day so

> that is .06 carbs. I know that doesn't seem like much but he only

> gets 1 carb a day after his supplements and meds.(that is with 1.6

> protein per kilo) Then I just found out there is cellulose in the

> diastat but I have yet to call the manufacturer for the specs on that.

> My dietitian and neuro are fed up with me talking to my internet

> group for advice. I now have a choice. I either follow all the

> dietitians suggestions- 2gr protein per kilo, Bugs Bunny vitamins, 4

> meals a day and probably add back the klonopin ...or find a new

> doctor. My husband says I should do it their way for a predetermined

> amount of time and if it does not help our situation then switch to a

> new neuro. I am wondering if I should set up something now for 8

> weeks somewhere else just in case. I could always cancel if we are

> doing better. I would also like an explaination of the doctors

> choices with his time expectations so we don't get forgotten and then

> they make new choices with new situations instead of looking at the

> whole picture. I really hate all this. I already had my good cry.

> Thanks for letting me vent.

> Dianna

> mom to 18 months Keto diet since 6-5

August 25, 2001

I noticed this right away too. The Bugs Bunny is what

our neuro/dietician recommended, but I refused to use

it because it has NutraSweet (plus it's not a very

complete vitamin). The vitamin we use is Bio

Glycozyme Forte from Biotics Research -- I know others

use their multi, which I might switch to also. You

can read up on it at www.dcnutrition.com and compare

it to the Bugs Bunny. Good luck. . .we don't have a

good keto team, either. Everything I've learned has

been from this list. I had one example in the

beginning where went into respiratory acidosis.

The dietician never mentioned it as a possibility --

although it's common. I'd read about it here and

immediately knew what to do (I gave her club soda).

I'm convinced that if I hadn't had this list and just

relied on my " team's " advice -- would have ended

up in the ER that night. I pretty much just use the

neuro and dietician as " consultants " now -- and don't

mention the list to them much, if at all!--D

--- rywilbrit@... wrote:

> Dianna: I feel so bad for you- so hard to find a

> really good group to help

> you with this diet. I think you are wise to give

> this a try but plan ahead

> if this does not work out. Not to add to your load

> but the one thing that

> stood out from your email was the bugs bunny

> vitamins. I am so surprised

> that is what the neurologist is giving you - there

> are a lot of people that

> have problems with that vitamin. I am not sure who

> , but I remember someone

> from this list a while ago making the change from

> bugs bunny to a " pure

> vitamin " and seeing a huge drop in the number of

> seizures her child was

> having. I know my dietician has told me she had a

> patient go seizure free

> after dropping that vitamin and has never recomended

> it again. Hate to add

> to your struggle but did want to pass this on. Best

> of luck !

>

=====

DeEtte -- Mom to (, 6, keto-kid since 1/01, med-free, seizures greatly

reduced) and (, 4), sdale, AZ

" I know God would never give me more than I can handle. . .I just wish he didn't

trust me so much. "

__________________________________________________

August 25, 2001

On Sat, 25 Aug 2001 06:46:20 -0700 (PDT) DeEtte Person writes:

I'm convinced that if I hadn't had this list and justrelied on my "team's" advice -- would have endedup in the ER that night. I pretty much just use theneuro and dietician as "consultants" now -- and don'tmention the list to them much, if at all!--DAt our last check up...I asked our dietitian if she needed any help...LOLOL

Gotta echo what D said! Weve been doing the diet with the sole help of this

list (and my own research) for the last 4 years!!! and when Bry was put

on all thoes saturated fats (with them denying he had food sensitivities)

and put him on a one-a-day with a calcium...it took him exactly 8 months

to toally spiral outa control, ending up on the couch with blue circles under

his eyes, no energy, and coughing and sick from thankgiving to christmas

until I took things into my own hands, took him to a naturopath, changed

his vitamins, oils and fatty acids, added different supplements, did my own

calculations and things improved. I was able to remove massive doses

of three different drugs, got my back from a total zombie and out

of total special ed, into mainstreem classes...and we

actually enjoyed drug free for a while (until my daughter brought home

chicken pox another story for another day)

But I donno, I guess I shoulda been afraid they would dump me, but I

just basicly did what I wanted to do and at every keto check up I would

show them my changes...since they never really had anything to offer,

my neuros exact quote was "I dont have a problem with what you are

doing". I gave my dietitian a bottle of Biotics research and she was

actually quite impressed!! I guess the proof is in the pudding and how

can they ague with success???

I think you have a good plan, find a back up incase you get dumped. I think

any neuro who gives you an ultimatum like that should be the one dumped anyhoo,

but then that is just my .02. I think we as parents should be give the

options...make an informed decision...not given ultimatums...its your

child! your the one that has to live with the consequences and I think

you should be considered part of the decision team!!!

aspartame is a known neurotoxin and causes seizures!

http://www.holisticmed.com/add/blaylock.html

cya

Barb

August 25, 2001