RE: which med to drop first? Rhonda's previous advice

[Guest guest]

Dear Rhonda

You were such a help to me before, when my daughter had another issue, if you

recall. When I read this post, I was encouraged that with a planner I can begin

working on what you referred to here: calories and ratio.

has had two horrendous days, seizuring like pre-diet days, or worse. No

meds on board.

Keep you posted. What to do when they won't eat???? mum to dear .

Rhonda Ackerman ackerman@...> wrote:

,

Part of fine tuning is reducing the meds and getting rid of as many as

possible. The keto diet is a very powerful drug, probably the most powerful

drug that Stella is presently on. When we started the diet our daughter was

on 3 meds. I chose to wean the med that we had last added. That one was

really easy to wean because it was a small dose and she had been on it for

only a couple months. Then I went for the next one we had last added.

During the wean of this one we had to stop for a while to bring down the 3rd

med due to suspicions of toxicity. Your doctor really needs to understand

that the keto diet causes most meds to go toxic. The level of toxicity is

much lower then for those on a regular diet. What Stella is experiencing

right now could very well be from too much meds on board. You can do all

the fine tuning you want with ratios, calories etc. but if it is a med issue

then most likely Stella's situation will not improve. This is why doing the

diet med free or as med free as possible is the ideal. With little or no

meds on board you know that it is not the meds causing problems but

something with the ratio, calories etc. I hope things go well with your

doctor's appointment,

Rhonda (mom to Shan, age 9, keto/atkins over 2 years)

Stella who is 5, is taking lamictal, diazepam, and diamox, she's been

on the diet now for 2 months, we've tweeked it and tweeked it, the last

being a 50 cal drop to 1225 day with protein at 21g/day. Other than

dropping her cals and not using a food exchange list, I calculate each

food seperately, and adding MCT oil (also using flax and coconut at

times too) what else is there other than to drop some meds right?

Since starting the diet she had gained 4lbs, thinking that might be the

culprit we've drop from 1325 to 1225, yet to see any improvement.

We have a doc apt next friday and I want to go in there prepared, I

really want to start lowering her meds and seeing if the diet improves

on it's own. I think because of her tendency to have status seizures

her doc might be reluctant to lower them since she is still having

seizures. (usually every other day or two)

This am, she's had 4 tonic clonics all in her sleep started at 6:30am

and it's been about every 45 mins or when she drops off into sleep

again. She's back to being non verbal, just moaning, her body can't

hold itself up and she is very shaky, (just about to check her blood

sugar level).

With every change that is made her seizures seem to be more persistant

and more frequent, I know the fine tuning process can take a long time,

but it's so frustrating and sad watching her fall back into the old

pattern of non stop seizures. If she continues today I " ll have to give

her the diastat and that's more valium. AAAAHHHH

So my question is for those far more experience than myself, what would

you do next?

amanda

" 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

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