Re: Gretchen - 4.5:1 ratio

[Guest guest]

Hi Gretchen, we are still on the 4.5:1 ratio, I know that I should

try it for a minimum of two weeks and Kristan started the 4.5:1 ratio

on August 12, so I am sticking with it, I want her to be on the 4.5:1

ratio for at least three weeks to give it time to work. I don't want

to jinx anything, but this morning her ketone read between 8-16 and

she hasn't had a seizure since Wednesday at 5:56 am! I'm not too

worried about the limited food options right now for Kristan, it's

still a struggle to get her to eat solid foods, she is mostly bottle

fed, but she is improving in her eating of solid foods.

Kristan has been med free since August of last year and shortly after

stopping all meds we started the diet which was exactly one year ago

today!

Thanks for listening. I hope Ethan is doing 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

[Guest guest]

Hi Satnam.

Thanks for posting your good news. You fear your good news might

be premature, but even if she has more seizures, I think those clear

days are a great sign. (and we can always hope and pray you are not

premature.) Maybe bumping up the ratio finally brought her ketones

to a level that would control the seizures. I found it interesting

that you quit meds before going on the diet. I actually think that

is an approach that should be used more often, when possible that is.

I think for Ethan starting the diet and immediatley starting the

medicine wean hit him with a double whammy. Perhaps we are still

suffering (hopefully recovering) from the stress of it all. We saw

the psychologist today, the one who will work with Ethan's 'psuedo

seizures'. He told us a coulple of interesting things. One is that

many doctors would claim that Ethan is faking them; so that makes us

especially thankfull for our nuerologist. I oould go into the

details of why we know he isn't faking, but I won't for now. He

also said that these episodes occur in all sorts of people, but are

more common in people with a history of seizures. Finally,

concerning the stess, he mentioned something we hadn't thought of

before. He suggested that for all t he years Ethan was on

medication, he was so zoned out that he never really felt stress.

Once getting clear of meds, or even during the weaning process, his

nervous system registered symptoms of stress for the first time in a

long time. So, now he has to learn how to control the stress, or the

symptoms of stess (ie. the 'psuedo siezures')

I don't know if these thoughts pertain to anyone else. Just

tought I'd put them out there just in case.

Love and peace to all. May those ketones stay high for .

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