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

[Guest guest]

Hi Lois, thanks for the information. How old is Claire and I'm

assuming she is drug free now that she is on the diet? Kristan has

the laughing kind of seizures too, and a variety of others, but she

has been unofficially diagnosed with migrating complex partial

seizures.

Satnam

> 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! "

>

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