Re: We are going to do a 4.5:1 ratio now/Gretchen

August 11, 2004

Hi Gretchen. I only use the ketone sticks to read Kristan's ketones,

we don't do the blood ketone check. We started using MCT oil back in

January of this year and it hasn't helped to raise her ketones, but

does help with her bowel movements. Thanks for the information about

the stomach pain, the keto team didn't mention that. I assumed they

wouldn't keep her on the higher ratios for long. Kristan has been

off all meds since August of 2003. About Protonix, is that a

prescription? What exactly is it? I might as well be prepared.

Satnam

> > 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 17, 2004

Hi Gretchen, thanks for the info on the Protonix. I don't think the

4.5:1 ratio is going to work. It's made no difference in the seizure

department, she is still having anywhere from 5-15 a day. Her

ketones since Sunday are between the 4-8 range, previously at 4 and

prior to starting Carnitor the ketones were at 1.5-4, so it makes me

wonder why no seizure improvement. I've been keeping an eye on her to

see if the ratio is hard on her stomach, but so far so good. She did

have a few choking seizures where she threw up a little, not total

out vomitting and I thought maybe that the ratio was hard on her, but

I think that was just a coincidence. One piece of good news is that

Kristan rolled from back to tummy last week, first time she has done

that, I was so happy I started calling all of my family.

I read one of your other posts, I'm glad to hear that Ethan is doing

so well.

Satnam

> > > > 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 18, 2004

Hi Satnam,

I have mixed feelings for Kristan. While I wish the 4.5:1 ratio

would have helped, I also remember how limited the food options are

at that ratio. Could it be you need to give her more time at that

level? I don't remember the details of Kristan's experience with

the Ketogenic diet, and I wish I had suggestions for you that would

help make those seizures go away. But, I am glad you are sticking

with this diet and not giving up. You are a regualar participant

here, so I know you know all about getting the kids off drugs in

order to get optimal control from the diet. I don't remember what

's medication levels are.

Hang in there. I'm pulling for you!

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 18, 2004