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

[Guest guest]

Thanks , I have read your other posts updating about Langan and

I am so glad to hear that she is so happy and interactive. I am

sorry about the night time seizures, the same thing happens to

Kristan.

Good luck with the SC diet?

I was wondering if you are using the Carn-Aware still with Langan, as

I have asked Kristan's Keto neuro about it and he said he's never

heard of it and if we want to use it that's our choice, but finds it

hard to believe that the Carn-Aware is shown to help with gross motor

skills, development and decreased seizure activity. He thinks that

it's on the market to give parents false hope. He basically said you

should be careful about what you read on the net, some people are out

just to make money.

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

[Guest guest]

, that's great news about Daphne's seizures having stopped. I

hope that continues. The Carnitor has been added in to get higher

ketosis. Kristan's carnitine level is normal.

Take care,

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

[Guest guest]

Thanks , I'm not complaining, I am so grateful at what she can

do. I hope is doing well.

Satnam

>

> Satnam,

>

> No smiling is not the end of the world. Its the same with .

At least

> she is vocal and learning to sit! Congrats. Give her a biiiiiggggg

hug for

> me!

>

> Gan Ai Lynn

> Vice President, Dealing

> JF Apex Securities

> Tel: 8732 3238 / 8737 7201

> Fax: 8736 3122 / 8737 2505

>

>

>

> " kristansmomm

> y " To:

ketogenic

>

lus.net> Subject:

We are going to do a

> 4.5:1 ratio

now

>

12/08/2004

> 02:01

AM

>

Please

> respond

to

>

ketogenic

>

>

>

>

>

> 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

>

>

>

>

>

[Guest guest]

in a way has been better...he doesnt gag as much and seems to be

more verbal, more ooohs and aaahs...he has not had a seizure since he was

last admitted for another bout of pneumonia in May and despite one of his

lungs collasping, his breathing is not as gurgly as before...he still has

thick phlegm at night and his legs are getting stiffer though, so its not

always smooth sailing for us. I don't exercise him non-stop, just when he

is in a good mood and doesnt protest much! Anyway, we are trying to

schedule a laproscopic gastro and fundo and we are having so much trouble

bc the surgeon comes from Adelaide and is workign with another surgeon in

the hospital that I am suing so we are having logistic issues with the

operation!!!

Val

" kristansmomm

y " To: ketogenic

Subject: Re: We are

going to do a

4.5:1 ratio now/

13/08/2004

02:15 AM

Please

respond to

ketogenic

Thanks , I'm not complaining, I am so grateful at what she can

do. I hope is doing well.

Satnam

>

> Satnam,

>

> No smiling is not the end of the world. Its the same with .

At least

> she is vocal and learning to sit! Congrats. Give her a biiiiiggggg

hug for

> me!

>

> Gan Ai Lynn

> Vice President, Dealing

> JF Apex Securities

> Tel: 8732 3238 / 8737 7201

> Fax: 8736 3122 / 8737 2505

>

>

>

> " kristansmomm

> y " To:

ketogenic

>

lus.net> Subject:

We are going to do a

> 4.5:1 ratio

now

>

12/08/2004

> 02:01

AM

>

Please

> respond

to

>

ketogenic

>

>

>

>

>

> 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

>

>

>

>

>