RE: which med to drop first?

[Guest guest]

Hi, My daughter was weaned off the valium first (was on 6 meds at the start

of the diet). Although she doesn't have 100% control yet, her dietician and

neuro feel that sometimes its the meds with the diet that are causing lack of

seizure control. With 6 meds she seized twice at week, while on the diet she's

had weeks of control, and some seizures here and there. Although usually

seizures could be traced to: withdrawal seizures from weaning a med, a cold or

fever, throwing up right after meds, etc. I look at it this way. She is 100%

more alert, happy, and trying to make new sounds. Most importantly we are

getting off those nasty, mind-numbing medications. When we have no meds on

board

- I'll have a clearer picture of what's going on.

Yes the diet's a pain in the behind sometimes, but after a while you will get

a rythym and it will seem easier. I tend to make lots of quiches,

cheesecakes, etc. that I measure into small pyrex bowls(that come with lids),

bake

around 12 at a time, then store in fridge. I've never tried freezing, but

others

say that it does work.

Good luck and don't let your neuro decide for you. If I hadn't wrote a

research paper on the ketogenic diet and read all the research I wouldn't have

been

pushy enough to demand an appointment with our dietician. Our neuro didn't

have much faith in the diet - he's just a doctor and doesn't know everything

afterall!

Hope this helps!

Heidi, future occupational therapist and single mom to (IS,

Severely/Multiply Impaired, Ketokid since 12/03) and twin brother, (4

years), and

big sis Madison (6).

[Guest guest]

Hey ,

The muffin recipe sounds great - could you send me the ingredients and what

ratio your daugher is on?

Thanks

Heidi, future occupational therapist and single mom to (IS,

Severely/Multiply Impaired, Ketokid since 12/03) and twin brother, (4

years), and

big sis Madison (6).

[Guest guest]

Thanks Heidi,

it gives me hope to hear our children do improve once the meds are

gone, it's really frustrating to see Stella have 5 (so far)seizures in

a morning all the big T/C's.

I too make lots of quiches, I haven't made the cheesecake yet, I

couldn't get it work with Stella's ratio and calories, our dietician

said it's hit or miss w/ that one. I also make lots of muffins using

Emmas recipe (one of the parents on here) it sure breaks up the egg

breakfast routine.

Stella is a complete vegetarian so she has no meat, all her protein is

eggs/cheese and lots of nuts.

Thanks for your message

amanda

On Thursday, July 15, 2004, at 10:38 AM, aubyinusa@... wrote:

> Hi, My daughter was weaned off the valium first (was on 6 meds at the

> start

> of the diet).  Although she doesn't have 100% control yet, her

> dietician and

> neuro feel that sometimes its the meds with the diet that are causing

> lack of

> seizure control.  With 6 meds she seized twice at week, while on the

> diet she's

> had weeks of control, and some seizures here and there.  Although

> usually

> seizures could be traced to:  withdrawal seizures from weaning a med,

> a cold or

> fever, throwing up right after meds, etc.  I look at it this way.  She

> is 100%

> more alert, happy, and trying to make new sounds.  Most importantly we

> are

> getting off those nasty, mind-numbing medications.  When we have no

> meds on board

> - I'll have a clearer picture of what's going on. 

> Yes the diet's a pain in the behind sometimes, but after a while you

> will get

> a rythym and it will seem easier.  I tend to make lots of quiches,

> cheesecakes, etc. that I measure into small pyrex bowls(that come with

> lids), bake

> around 12 at a time, then store in fridge.  I've never tried freezing,

> but others

> say that it does work.

> Good luck and don't let your neuro decide for you.  If I hadn't wrote a

> research paper on the ketogenic diet and read all the research I

> wouldn't have been

> pushy enough to demand an appointment with our dietician.  Our neuro

> didn't

> have much faith in the diet - he's just a doctor and doesn't know

> everything

> afterall!

> Hope this helps!

>

>

> Heidi, future occupational therapist and single mom to (IS,

> Severely/Multiply Impaired, Ketokid since 12/03) and twin brother,

> (4 years), and

> big sis Madison (6).

>

>

>

[Guest guest]

Heidi,

You might get other results w/ your ratio but Stella gets 1225 cals/day

I make 2 muffins with

egg (I calculate the egg white and yolk seperately)

almond flour (just ground up almonds) usually called almond meal

ground flax (or you can use unsweetened coconut if you need to fudge

the ratio)

butter

then you choose your fruit

I also made some super yummee ones with lemon extract and poppyseeds,

you need to calculate the poppyseeds of course

I'll get my exact info and send it you later today, I'm upstairs as

stella is having an awful day with tonic clonics, 8 so far this am.

Just got of the phone w/ the dietician, I guess when I took her blood

sugar it is high 107 then 111, also her urine is super concentrated and

showing some hemeglobin in there. Her sodium is high too, yet she

doesn't have any remedies to tell me.

So my daughters muffins are still sitting waiting for her to wake up

and eat them.

amanda

On Thursday, July 15, 2004, at 11:52 AM, aubyinusa@... wrote:

> Hey ,

>

> The muffin recipe sounds great - could you send me the ingredients and

> what

> ratio your daugher is on?

>

> Thanks

>

>

>

> Heidi, future occupational therapist and single mom to (IS,

> Severely/Multiply Impaired, Ketokid since 12/03) and twin brother,

> (4 years), and

> big sis Madison (6).

>

>

>

[Guest guest]

,

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