Re: Hello, I'm a new member

[Guest guest]

Yes we do get her her shots, but she got her four month shots right after she

started. She still gets her regular shots. She drinks the fruit flavored water,

it has no carbs in it. We bought the keto 2.0 disk and we make her meals

ourselves. It has tons of different foods in it and we pick what we want to mix

together and it calulates everything until we get her ratio, which is 3.8:1. It

is an awesome program. It takes a minute or two to get it just right. You have

to play with the grams until you get it right, but it is so easy. She eats a

variety of different baby foods mixed with either butter, cream cheese or mayo.

She is finally putting on weight since we started the baby food. And after being

on the diet since March she is finally eight weeks seizure free. It was a ruff

2003 year but I have faith 2004 will be awesome!

If there is anything I can do or you want to talk about let me know. It is great

to have some else to talk to.

Kristi

Kristi Mann

Smile make everyone wonder what your thinking

May God Bless you today, tomorrow and always

[Guest guest]

Thanks Kristi, I need to talk to my dietitian first about what meal

planning program she uses, we haven't even discussed it yet. I

downloaded the Stanford and it looks so confusing!

Kristan has had close to 60 seizures today and I don't know why! She

is finally teething, but it doesn't seem to be bothering her, she

doesn't have diahrea or fever from the teething. I don't know if it

is a coincidence, but I have noticed that her seizures picked up to

close to 20 a day from 5 when we started solids. Did this ever

happen with you?

Satnam

>

> Yes we do get her her shots, but she got her four month shots right

after she started. She still gets her regular shots. She drinks the

fruit flavored water, it has no carbs in it. We bought the keto 2.0

disk and we make her meals ourselves. It has tons of different foods

in it and we pick what we want to mix together and it calulates

everything until we get her ratio, which is 3.8:1. It is an awesome

program. It takes a minute or two to get it just right. You have to

play with the grams until you get it right, but it is so easy. She

eats a variety of different baby foods mixed with either butter,

cream cheese or mayo. She is finally putting on weight since we

started the baby food. And after being on the diet since March she is

finally eight weeks seizure free. It was a ruff 2003 year but I have

faith 2004 will be awesome!

>

> If there is anything I can do or you want to talk about let me

know. It is great to have some else to talk to.

>

> Kristi

>

>

>

>

>

>

>

> Kristi Mann

>

> Smile make everyone wonder what your thinking

>

> May God Bless you today, tomorrow and always

>

>

>

[Guest guest]

Satnam,

Welcome to the group!

Obviously the diet is helping Kristan. With greatly decreased

seizures overall and some seizure free days, you are going in the

right direction.

How long has it been since she has been off ALL her previous

medications? That would be my first thought about not having

complete control yet. It takes a while to get the drugs completely

of one's system and perhaps longer for her brain to stop " missing "

them.

What have ketone levels been on the seizure free days? Once the

effects of weaning the drugs are not part if the issue, you might

consider adjusting her ratio... slowly.

Have her ht. and wt. increased since starting the diet. Finding the

right calorie level can take some time, too, because for some kids,

the limits are narrow. Correct calorie intake is important, though.

We don't use Kraft mayo because I don't like it. We use Best Foods

(Hellman's). I don't think the small amt of sugar would be the

problem. It should be calculated into the meal, though.

Cammie

[Guest guest]

Hi Cammie, stupid me, now that I have reread what you said, it makes

sense, where do I go for keto, duh!

I just met with the dietitian today and we are going to add the MCT

oil and she's now put Kristan on the 4:1 ratio and I have stopped

solids until we can get the seizures more under control. Kristan's

had a real rough week, she's up to 50-60 seizures a day.

Satnam

> > > Satnam,

> > >

> > > Hooray for you for getting off the meds!!! Was that your idea

or

> > > your keto team? Actually, I'm curious to know where you are

> going

> > > for keto... much of what you said sounds like our dietician.

She

> > > collaborates with a group also and I think they use a lot of

each

> > > other's ideas. It seems that some of their protocol is

not " the

> > > usual " -- just my observation from what I've read here and

> > elsewhere

> > > about other teams. What they do is working for us so I'm not

> > > complaining in the least. They definitely think " outside the

> box "

> > > which appeals to me very much.

> > >

> > > The one thing that isn't familiar is the lack of support. Our

> > > dietician (and neuro, too) are incredibly supportive.

Sometimes,

> I

> > > have felt like our daughter is their only patient... and I KNOW

> > > that's not the case. I'm sorry your dietician is telling you

the

> > > diet isn't working. Of course, it's working... Kristan's

> seizures

> > > are decreased. They aren't gone... yet... but who knows??? In

> the

> > > very end, the questions you have to answer are, " Is Kristan

> better

> > on

> > > the diet than she was before? " and " Is it worth it to keep

her

> > on

> > > it a while longer? "

> > >

> > > Do you know if Kristan's ketone level is lower at the time she

> has

> > > seizures? If so, my only thought based on what you said below

is

> > > that you could increase her ratio (which really means adding

more

> > fat

> > > while keeping calories the same). If her weight is lower than

> when

> > > she started the diet, I would think of a calorie increase,

too.

> > But,

> > > it's best to do one thing at a time. I've used some MCT oil

for

> > > years so we do use a little on the diet. Does your dietician

> want

> > > you to do the MCT version of the diet or just add some MCT oil

to

> > > what you are doing now?

> > >

> > > Something just occurred to me... You have been using KetoCal.

I

> > read

> > > on the EFA forum that a lot of KetoCal had been recalled

because

> > the

> > > nutrient ratio wasn't correct. You might ask your dietician

> about

> > > this because if that's the only thing you were on, maybe you

> > weren't

> > > getting the ketogenic ration you need. Just a wild thought.

> > >