Re: Why all the difference in keto centers?

March 16, 2004

,

I was reading your reply and had this question for you or whoever

wants to jump in. We met with our keto team today and begin March

29th. I am so excited and ready to give this a try, but we found out

that they are starting out on 3.5:1:1 instead of 4:1:1 since he

is 16 months old. Do you find this is typical? Also they are less

restrictive on fluid intake than Hopkins. What kinds of things do I

need to do to ensure we get the best possible shot at this diet. If

we don't see total control, do I push to up the ratio and decrease

fluids. Is this all part of the fine tuning that I hear so much

about. Maybe I just answered my own question. Other than these two

things, they appear to be per the book. I just want to do whatever I

have to do to get this to work.

Tina (mother to 16 months generalized myoclonic, tonic clonic,

and partial seizures)- taking phenobarb, topamax, and depakote

> I think that the centers that follow Hopkins protocol have much

more success. We started at a center where the neuro was Hopkins

trained but didn't really follow protocol and the dietician was

trained by someone who was trained by someone who was trained by

someone who was trained at Hopkins. We have since changed to a

hospital that follows the Hopkins protocol and where both neuro and

dieticians are Hopkins trained. The meals are more restrictive but

the difference (so far) is unbelievable. I just think keto is too

hard on everyone to not do it right. That's just my two cents. And,

for what it's worth, my daughter seems happier and has more energy

now. I have a theory that she was going in and out of ketosis and

that was causing stress to her little system. Just my unscientific

guess, but I am all for the stricter Hopkins protocols.

>

> As for meals, I used a planner and made my own with the old

center. The new center took my meals and put them in their planner

and they were all across the board! The dietician said that the meal

planners that are available for parents are outdated and not terribly

accurate. For now, I give her ingredients and she emails me the meal

plans. It is not as convenient but it has made a world of

difference. I think once we've been on the diet for a while I'll

venture back out into making my own meals, but for now I am sticking

with the hospital formulated ones!

>

> Good luck! I hope all works well for you and your child!

>

> , mom to Langan, 19 months old and keto kid since 11/03 (but

just started keto with real keto center 03/04)

> Why all the difference in keto centers?

>

> My son will be initiating at children's in Seattle and they seem

to

> be pretty much Hopkins protocal for the diet.Why do some start

with a

> non fast and allow so many other foods?We seem to be very limited

in

> what he is going to be allowed to have.On the one hand I want

this to

> work for him,but on the other hand feel that this is going to be

so

> much harder with the limited food choices.We are only allowed to

use

> liquid sacharin as a sweetener, I was hoping to be able to use

liquid

> splenda.Have many of you using Hopkins protocal been able to come

up

> with some tasty meals?Can you help that would be greatly

> appreciated.Linn

>

> " 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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March 16, 2004

Hi, Tina. I can try to help you although I am still relatively new at this,

too.

Langan was started on a 3.4:1 ratio b/c of her age and then bumped to a 3.6:1.

Our new center immediately put her on 4:1. I read in Dr. Freeman's book that

kids under 2 start at 3.5:1 so that may be what they are thinking. I have been

surprised at how little a difference there is b/w the ratios, although I think

even tiny changes can make a big difference in seizure control.

I think the unrestricted fluid intake is the newer thinking by the keto centers.

I don't even think Hopkins is limiting fluids all the time (although I think

they and most centers still recommend that the child not drink a large amount at

one time). I think they have discovered that larger liquid amounts were

diluting the urine ketones, making them look like they were lower when it was

actually just b/c they were diluted. Now it seems that most centers are using

blood ketones so they are not as concerned about that.

If there are problems when you start the diet, your dietician will know what to

do. The " golden rule " is to not make more than one change at a time and to give

each change 7-10 days to take effect- that's what I learned here and that's what

our new keto center says. Lowering meds will also potentially cause some

seizure problems- whether it is withdrawals or that it causes ketone

fluctuations who knows.

What to do to ensure you give the diet the best chance? This one I can answer:

1. make sure that you are with a keto team that is very accessible and

proactive.

2. keep detailed records- I have a log that we keep that shows the time of

every meal, which meal, fluid intake and amounts and what fluid, medicine dosage

and times, ketone levels, seizure activity or possible seizure activity, bowel

movements, sleep times and daily weight. It has proven to be extremely useful

in isolating patterns and in determining where we need to focus

3. get a high quality digital scale that measures to the tenth of the gram

4. stay active on this board and utilize the knowledge here

5. stick to the meals you are given to the exact letter. I recommend only

using your dieticians meals and not doing your own meals until your child is

stable on the diet (learned that one the hard way)

6. if possible, and with your neuros blessing, try to wean your child from the

meds ASAP- they mess with the diet in strange ways!

Good luck! I am so excited for you and I really hope this is the answer for

!!

Why all the difference in keto centers?

>