Re: New to Keto need help

[Guest guest]

,

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?

>

>

[Guest guest]

Hi ,

Within the first 2 weeks is when it is common to see the AED's strength

increase if they are going to, this has happened a lot with others on this list,

and did with my son . Good control for the first week, then towards the

end of the second week the seizures started creeping back.

Damon's initial response is the main thing to focus on, this usually means

that with diet and/or med finetuning you will probably get it back again.

If meds are an issue (ketosis can alter the protein binding mechanisms of a

lot of medications, sometimes this is reflected in blood levels, but not always,

and barbiturates are def one class of meds that this can happen with) then

constipation can aggravate that side of things, so that may be tied in as well.

Our clue with 's AEDs rising up to toxic levels (causing the seizures to

return) were the timing of his seizures intially - like the first breakthrough

one after diet intitiation came as one of his morn meds peaked, but after a

while he got so stuck back into the seizure cycle that this was then too hard to

pick up. After reducing, we got control back, but the rest of his 3 yrs on the

diet (and counting..) would take a bit long to write in this post

Are there any other signs like grogginess, more sedated than usual etc that

would sway you towards the thought that this med/diet combo toxicity may have

happened in his case?

----- Original Message -----

From:

My name is my son is Damon he is 14 mos old. Generalized sz

disorder at 4 mos old. 13 sz meds all have failed. GMs under control

with keppra and phenobarb. Absance/myclonic drops and eye twitches

100-200 before diet. Our diet intiation was last mon, the first day

he vomited but I think that was from meds with nothing to eat for a

day. By day three of the diet saw improvement. We are on day 9 of

the diet I had HUGE sz control, until this morning, he was

constipeted and I gave him a suppository he went he also has c-diff

(battling since april) the sz are extremely brief which is an

improvement but come almost just as often. Up until now I barely saw

the sz. What happened. He is NPO G-tube feed, ketocal, microlipid,

and polycose a 3.5-1 ratio he is 14 mos and weighs 25lbs. I just

don't understand why the sz are coming back? ANy help please.

Thanks

[Guest guest]

Hi , welcome to the group. In regards to the Ketocal, my

daughter Kristan is on it. I'm in Canada and I had checked into the

problem with the formulation here and my dietitian told me that it

was ok, might have been a problem just in the States.

For constipation, I used Philips Milk of Magnesia and also giving

Kristan water helped with her bowel movements. I thought you had

said she is on ketocal, microlipd and polycose powder. Kristan's

ketocal recipe consists of ketocal, resource protein powder and MCT

oil. We did use microlipid but then switched to MCT oil. MCT oil

helped with her constipation. We had added in the MCT oil to up

ketones, but it didn't. NOw we still use MCT oil as one her fats in

the diet.

Hope this helps.

Satnam, mom to Kristan, 22 months

Keto kid since August 2003 and currently weaning from the diet

> >

> > 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?

> >

> >