Re: Searching for help Joanne

[Guest guest]

Joanne, due to her age, and she has a g tube, i would consider talking to her neuros about the ketogenic diet, not every one likes it or agrees with it, but if she is a canidate for it, once she is on it, they can wean her off her seizure meds and see how much the meds are affecting her..

We considered the diet for Hailee and her seizures, but she wasnt a good canidate for it, because of her feeding issues, she will try to eat by mouth and only certain foods but we didnt want to take that away from her to go to total g tube feeds for the diet, the diet dosnt have to be done by g tubes, but ive noticed it is easiest for those who have it, dont have to worry weather the kids like the food. (which is gross) the diet is very successful, and i would consider doing some reasearch on it.

the other consideration for her seizure control is what we opted for is the vagul nerve stimulator, hailee has had hers for a year and we are now off all 6 seizure meds except for one, and havent had a grandmal in over 6 months. This has been wonderful, since being off the seizure meds, she is healthier, she is eating more on her own, her mental status has improved so much, she is now talking full sentances using all kinds of words.

I wish you luck and i hope your daughter finds some answers, but at least here are some other options for you besides just meds, which take so much away from them.

you can email me privately if you have questions on either Angels4hailee@...

[Guest guest]

Thanks so much for all your information. We went to CCF yesterday

and spoke with Dr. Parikh and he suggested all of these. My

daughter is going to talk with Dr. Wylie who is with the epilepsy

group at CCF to try to decide which of these options would work

best. We were glad to hear that the vagul nerve stimulator is

something that worked well for you. It's all pretty scary. Thanks

again for your help.

Joann

> Joanne, due to her age, and she has a g tube, i would consider

talking to her

> neuros about the ketogenic diet, not every one likes it or agrees

with it,

> but if she is a canidate for it, once she is on it, they can wean

her off her

> seizure meds and see how much the meds are affecting her..

>

> We considered the diet for Hailee and her seizures, but she wasnt

a good

> canidate for it, because of her feeding issues, she will try to

eat by mouth and

> only certain foods but we didnt want to take that away from her to

go to total

> g tube feeds for the diet, the diet dosnt have to be done by g

tubes, but ive

> noticed it is easiest for those who have it, dont have to worry

weather the

> kids like the food. (which is gross) the diet is very successful,

and i would

> consider doing some reasearch on it.

>

> the other consideration for her seizure control is what we opted

for is the

> vagul nerve stimulator, hailee has had hers for a year and we are

now off all 6

> seizure meds except for one, and havent had a grandmal in over 6

months.

> This has been wonderful, since being off the seizure meds, she is

healthier, she

> is eating more on her own, her mental status has improved so much,

she is now

> talking full sentances using all kinds of words.

>

> I wish you luck and i hope your daughter finds some answers, but

at least

> here are some other options for you besides just meds, which take

so much away

> from them.

>

> you can email me privately if you have questions on either

> Angels4hailee@a...

>