Re: Re:Question for Cammie

[Guest guest]

Dear Cammie

I noted your daughter has been med and seizure free for over a year... and now

the wean. How is it decided when to wean? A year of seizure free living? We

aren't there yet, but what is the criteria? thanks. ...also mum to a

dear " . "

cammie562003 jms@...> wrote:

,

Welcome to the group. There are lots of things to think about when

fine tuning (tweaking) the diet. Two things that jump out at me are--

(1) medications--AEDs can have a negative effect on the diet. Did you

discuss weaning meds with your keto team? There are lots of

different approaches to weaning meds. (2) ketocal--my daughter

started the diet in Aug 03. We used ketocal as her meals the first

day in the hospital. The dietician told us to take it home and use

it for an emergency meal or as a sick meal because it's " totally "

ketogenic. A few weeks later, she called and asked if we had used it

(we hadn't) and told us to throw it away. Apparently there was some

problem with the formulation and it wasn't the correct ratio. There

was some discussion about this in the group a while back, as well. I

would call your dietician and see if she knows about the " problem "

and whether it has been corrected. Since ketones are looking pretty

good, this may not be the problem but it's worth checking out. Maybe

someone else here is using ketocal and has more info.

As said, constipation can trigger seizures. Perhaps the C-

diff is playing a role, too, as infections can cause seizure flare-

ups.

Fluid balance is a big issue on the diet, too, especially in the

beginning. Since you are using a g tube, this is probably easier to

control than when using food and drink, but something to think

about. Does he have as many wet diapers as pre-diet? Are you

measuring urine specific gravity?

Sometimes you just have to be patient and wait--this is the hardest

part. Do keep a record of EVERYTHING. You never know when something

will jump out at you. You have to be a " detective " -- it can seem

overwelming at first, but you will become a pro in no time. Your

noticing decreased seizures at the start is a good sign. Sometimes

the smallest change can make a difference. It's important to makes

changes one at a time and wait a week or two before making another.

Keep posting your questions. Someone here will be able to help.

Cammie

Mom to , 8 yrs. old, seizure free 14mo, drug free 13mo. Starting

wean slowly.

>

> I only have the keto stix and he is large has been since day2

> sometimes 80 sometimes 160 but no it doesn't turn dark immediately.

> WHat do you mean by tweeking?

>

>

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