RE: We are going to do a 4.5:1 ratio now

August 11, 2004

Satnam,

Claire was on Lamictal and Depakote and then we started the diet. She

has every kind of seizure (including laughing) you can imagine. When we

started the Lamictal to try and control the multitude of drop seizures

she was having everyday. We started her on 5mg and only increased by

5mg every ten days or so. It was a very long on boarding but she had no

problems whatsoever. I was also diligent about checking her everyday

for any symptoms that might indicate a reaction. Claire is

communicative (gestures, a few signs, a lot of screaming, singing with

some utterances etc.) but doesn't have much language so it is really

difficult to know when she doesn't feel well.

Lois

We are going to do a 4.5:1 ratio now

Hi everyone, as Kristan is not getting into high ketosis, our last

desperate attempt is to go to a 4.5:1 ratio for a few weeks see if

that works and if not then try 5:1 ratio for a few weeks. We just

met with our keto team and this was there suggestion. We also

started Carnitor which has raised her ketones to a 4 consistently now

but no higher. Carnitor helps with her bowel movements, since

starting it she goes twice a day. If the higher ratios don't work,

then I think we will stop the diet, we will wean her off. We have

been going back and forth about the diet and I am so afraid to stop,

but we just think if she has good days and bad days on the diet,

what's the point, she could be like this on a regular diet. I wanted

to commit to a year and it will be a year on August 19.

Kristan's neuro has suggested Lamictal (I know , I remember what

Langan went through) and I am real hesistant, but Kristan's neuro

said there are fewer side effects as you increase slowly with

Lamictal and fewer side effects when you start on a lower dose. If

we do stop the diet, we are actually going to try a naturopath first,

Kristan's general practitioner knows of a naturopath who has been

successful in treating patients with epilepsy by giving supplements,

I need to look into it more as I am not sure if he has treated kids

and anyone with as many seizures as Kristan has had, but going with a

naturopath will be our first choice than a drug.

Kristan is still working on her independent sitting, which we are so

happy about, she still can't get up when she falls over. She is

still delayed in other areas, no consistent looking at you, no

laughing or smiling (it just breaks our heart, especially for my

husband, when he comes home from work, he is so excited to see her

and Kristan is not happy to see him as he puts it), but when she uses

her voice, you can tell she is in a good mood and her eyes look real

bright as if she is happy, even the neuro and dietitian said that,

she was very vocal at the last apointment.

So, that's my update. Wish us luck.

Satnam,mom to Kristan, 20 months

Keto kid since August 2003

" 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!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

August 11, 2004

Hi Satnam,

Good luck with the 4.5:1 ratio. I hope it works to raise

Kristan's ketones. I'm surprised they are still so low after being

on the diet for a year, now. If you are getting a 4 reading on your

home meter, keep in mind that the reading is probably low. Maybe

you already know that. Have you tried MCT to boost ketones? My son

was on 4.5 for awhile. It is tough. If developes a lot of

stomach pain, it could be reflux. Protonix cleared that problem up

for us. I hope you don't have to go to 5. Just keep in mind, they

won't keep her at those levels indefinately, and when she comes down

the diet will seem almost normal. Is she still taking meds? YOu

have probably already given this information, but my attention has

been sporatic.

Of the 7 meds my son tried, lamictal had the fewest side

effects.

I admire your dedication to this diet. I'm pulling for little

!

Gretchen

> Hi everyone, as Kristan is not getting into high ketosis, our last

> desperate attempt is to go to a 4.5:1 ratio for a few weeks see if

> that works and if not then try 5:1 ratio for a few weeks. We just

> met with our keto team and this was there suggestion. We also

> started Carnitor which has raised her ketones to a 4 consistently

now

> but no higher. Carnitor helps with her bowel movements, since

> starting it she goes twice a day. If the higher ratios don't

work,

> then I think we will stop the diet, we will wean her off. We have

> been going back and forth about the diet and I am so afraid to

stop,

> but we just think if she has good days and bad days on the diet,

> what's the point, she could be like this on a regular diet. I

wanted

> to commit to a year and it will be a year on August 19.

>

> Kristan's neuro has suggested Lamictal (I know , I remember

what

> Langan went through) and I am real hesistant, but Kristan's neuro

> said there are fewer side effects as you increase slowly with

> Lamictal and fewer side effects when you start on a lower dose.

If

> we do stop the diet, we are actually going to try a naturopath

first,

> Kristan's general practitioner knows of a naturopath who has been

> successful in treating patients with epilepsy by giving

supplements,

> I need to look into it more as I am not sure if he has treated

kids

> and anyone with as many seizures as Kristan has had, but going

with a

> naturopath will be our first choice than a drug.

>

> Kristan is still working on her independent sitting, which we are

so

> happy about, she still can't get up when she falls over. She is

> still delayed in other areas, no consistent looking at you, no

> laughing or smiling (it just breaks our heart, especially for my

> husband, when he comes home from work, he is so excited to see her

> and Kristan is not happy to see him as he puts it), but when she

uses

> her voice, you can tell she is in a good mood and her eyes look

real

> bright as if she is happy, even the neuro and dietitian said that,

> she was very vocal at the last apointment.

>

> So, that's my update. Wish us luck.

>

> Satnam,mom to Kristan, 20 months

> Keto kid since August 2003

August 11, 2004

Hello Satnam,

I'm sorry to hear that , I hope Kristan will have better ketones with higher

ratio but I wander if some children don't do well with not so high level?

You sait Kristan is about 4, is it her blood ketones level?

aël is about 3 or 4 and it's high for him, he vomits at this level so I

don't know what to think about blood ketones levels. Which is the good number in

the keto diet? is it obliged to have these or can it be helpful with lower

levels?

Take care

Carolyn, aël's mum