Stella had an MRI today...

[Guest guest]

&

We just try to make things that Tanner doesn't like extremly well. He has

always been a picky eater so that works to our advantage now. Birthdays are

cheesecake here. Then he can have his own ketogenic one. My other 2

grandchildren come over to my house by themselves and I buy them a candy bar

occasionally. They don't tell him about it. But he does get ice cream made

from his cream. He eats that a lot.

I have a lot of sympathy for him because I have dieted my whole life.

Hallie

Re: Stella had an MRI today...

Hope all is well for the VNS. Poor Stella, wanting

to sniff the food she can't have. One of my aunts did

that with pickles which was not good for her. She said

that satisfied her somewhat so maybe it's so for Stella

too.

Good luck with the VNS.

Saro..........Rohan's mum (still on the waiting list for VNS)

and Stansfield-lyons wrote:

>We started the 1st of a few tests before Stella goes in for the VNS, she had

>her MRI today,

>STella has started sniffing everything she cannot eat, we had enchiladas

>last night, and she had a keto one, but it was tiny compared to the real

>thing, all she wanted to do was sniff my plate, then it was Anisa's birthday

>(big sis turned 10) and out came the cake, and poor stella was just sniffing

>away. SO SAD... I hate that feeling, especially when we're not getting the

>results we so wished we would from the diet. I'm still hanging in for the

>6month mark then reassessing at that time if we should continue.

>

>

>

[Guest guest]

HI , I'm sorry that Stella is having such a hard time. You

mentioned that you will see at the six month mark if you will

continue with the diet. My little Kristan has been on the diet for

one year now and we have had reductions in seizures but never gotten

into high ketosis. Her seizures can be all over the place, she has

good and bad days. We have done a lot of fine tuning and that takes

awhile and I know it is hard and you know what is best for your

child, but if you can, try to stick with it for a year. Maybe you

need to drop the meds as they could be interfering with the diet,

meds never worked for Kristan. We are going to stick with the diet

for another few months and then I think we may stop it, but I'm

hanging in there for now.

Good luck with everything.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003

> We started the 1st of a few tests before Stella goes in for the

VNS, she had

> her MRI today, hubby had to go as I was working she started the

morning

> off great too, was hungry (a first in a long time) and she couldn't

eat

> anything after 7am, of course she woke up at 10am. Quite a few

seizures the

> last couple of days!!! Any way, her whole schedule is thrown off,

she spent

> about 45mins sleeping after the general anesthesia wore off, she's

still

> finishing her 1st meal of the day and it's almost 6pm. YIKES!!!

> Next is the consult w/ the neuro surgeon to talk about VNS, he will

also do

> a muscle/skin biopsy to check for mytochondrial disorders (bad

spelling).

> This weekend I'm volunteering at the E camp for kids here in WA,

I'm a

> little hesitant to leave STella being in the fragile state she is,

hubby

> will hopefully manage, i'll make her food for the 3 days i'm gone

so that

> will all prepared, just a little nervous. Her older sister went

last year

> and made some wonderful friends who have sibs w/ E so now it's a

tradition.

> Also, we have a meeting next week with the teacher/assitant/and her

personal

> aid at school to talk about her seizures. We're adding a few

things to her

> IEP for security, I'm hoping kindergarden won't stress her out too

much, and

> that she can focus. Shes is a transitional K class, doing the

normal

> curriculum but smaller class size and more freedom. I'm in panic

mode

> because of all her drops/getting hurt/making sure someone is w/ her

at all

> times etc... and then the food part.

> STella has started sniffing everything she cannot eat, we had

enchiladas

> last night, and she had a keto one, but it was tiny compared to the

real

> thing, all she wanted to do was sniff my plate, then it was Anisa's

birthday

> (big sis turned 10) and out came the cake, and poor stella was just

sniffing

> away. SO SAD... I hate that feeling, especially when we're not

getting the

> results we so wished we would from the diet. I'm still hanging in

for the

> 6month mark then reassessing at that time if we should continue.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.

[Guest guest]

HI , I'm sorry that Stella is having such a hard time. You

mentioned that you will see at the six month mark if you will

continue with the diet. My little Kristan has been on the diet for

one year now and we have had reductions in seizures but never gotten

into high ketosis. Her seizures can be all over the place, she has

good and bad days. We have done a lot of fine tuning and that takes

awhile and I know it is hard and you know what is best for your

child, but if you can, try to stick with it for a year. Maybe you

need to drop the meds as they could be interfering with the diet,

meds never worked for Kristan. We are going to stick with the diet

for another few months and then I think we may stop it, but I'm

hanging in there for now.

Good luck with everything.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003

> We started the 1st of a few tests before Stella goes in for the

VNS, she had

> her MRI today, hubby had to go as I was working she started the

morning

> off great too, was hungry (a first in a long time) and she couldn't

eat

> anything after 7am, of course she woke up at 10am. Quite a few

seizures the

> last couple of days!!! Any way, her whole schedule is thrown off,

she spent

> about 45mins sleeping after the general anesthesia wore off, she's

still

> finishing her 1st meal of the day and it's almost 6pm. YIKES!!!

> Next is the consult w/ the neuro surgeon to talk about VNS, he will

also do

> a muscle/skin biopsy to check for mytochondrial disorders (bad

spelling).

> This weekend I'm volunteering at the E camp for kids here in WA,

I'm a

> little hesitant to leave STella being in the fragile state she is,

hubby

> will hopefully manage, i'll make her food for the 3 days i'm gone

so that

> will all prepared, just a little nervous. Her older sister went

last year

> and made some wonderful friends who have sibs w/ E so now it's a

tradition.

> Also, we have a meeting next week with the teacher/assitant/and her

personal

> aid at school to talk about her seizures. We're adding a few

things to her

> IEP for security, I'm hoping kindergarden won't stress her out too

much, and

> that she can focus. Shes is a transitional K class, doing the

normal

> curriculum but smaller class size and more freedom. I'm in panic

mode

> because of all her drops/getting hurt/making sure someone is w/ her

at all

> times etc... and then the food part.

> STella has started sniffing everything she cannot eat, we had

enchiladas

> last night, and she had a keto one, but it was tiny compared to the

real

> thing, all she wanted to do was sniff my plate, then it was Anisa's

birthday

> (big sis turned 10) and out came the cake, and poor stella was just

sniffing

> away. SO SAD... I hate that feeling, especially when we're not

getting the

> results we so wished we would from the diet. I'm still hanging in

for the

> 6month mark then reassessing at that time if we should continue.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.

[Guest guest]

HI , I'm sorry that Stella is having such a hard time. You

mentioned that you will see at the six month mark if you will

continue with the diet. My little Kristan has been on the diet for

one year now and we have had reductions in seizures but never gotten

into high ketosis. Her seizures can be all over the place, she has

good and bad days. We have done a lot of fine tuning and that takes

awhile and I know it is hard and you know what is best for your

child, but if you can, try to stick with it for a year. Maybe you

need to drop the meds as they could be interfering with the diet,

meds never worked for Kristan. We are going to stick with the diet

for another few months and then I think we may stop it, but I'm

hanging in there for now.

Good luck with everything.

Satnam, mom to Kristan, 20 months

Keto kid since August 2003

> We started the 1st of a few tests before Stella goes in for the

VNS, she had

> her MRI today, hubby had to go as I was working she started the

morning

> off great too, was hungry (a first in a long time) and she couldn't

eat

> anything after 7am, of course she woke up at 10am. Quite a few

seizures the

> last couple of days!!! Any way, her whole schedule is thrown off,

she spent

> about 45mins sleeping after the general anesthesia wore off, she's

still

> finishing her 1st meal of the day and it's almost 6pm. YIKES!!!

> Next is the consult w/ the neuro surgeon to talk about VNS, he will

also do

> a muscle/skin biopsy to check for mytochondrial disorders (bad

spelling).

> This weekend I'm volunteering at the E camp for kids here in WA,

I'm a

> little hesitant to leave STella being in the fragile state she is,

hubby

> will hopefully manage, i'll make her food for the 3 days i'm gone

so that

> will all prepared, just a little nervous. Her older sister went

last year

> and made some wonderful friends who have sibs w/ E so now it's a

tradition.

> Also, we have a meeting next week with the teacher/assitant/and her

personal

> aid at school to talk about her seizures. We're adding a few

things to her

> IEP for security, I'm hoping kindergarden won't stress her out too

much, and

> that she can focus. Shes is a transitional K class, doing the

normal

> curriculum but smaller class size and more freedom. I'm in panic

mode

> because of all her drops/getting hurt/making sure someone is w/ her

at all

> times etc... and then the food part.

> STella has started sniffing everything she cannot eat, we had

enchiladas

> last night, and she had a keto one, but it was tiny compared to the

real

> thing, all she wanted to do was sniff my plate, then it was Anisa's

birthday

> (big sis turned 10) and out came the cake, and poor stella was just

sniffing

> away. SO SAD... I hate that feeling, especially when we're not

getting the

> results we so wished we would from the diet. I'm still hanging in

for the

> 6month mark then reassessing at that time if we should continue.

>

> --

> -mom to Stella, 5years old, started keto diet May 10th 2004

still

> waiting to be seizure free. Also on Lamictal, epam and

Diamox. Anisa

> is almost 10 and a happy healthy girl.