Re: New to the diet, new to the board.

[Guest guest]

YOur message was posted, Caitlin. Welcome to the group. I'm glad

to hear Lilly is doing well. How old is she?

Gretchen

> I just wanted to post a quick hello and thank you. I've been

reading

> the posts for a bit and have gleaned a lot of information. My

> daughter has been on the diet since March 17, 2004 and it's been

> overall a good experience, some ups and downs. I'll post more

later

> if I can get this to post. I tried before, but it didn't seem to

> take.

>

> Caitln, Lily's mom.

[Guest guest]

Thanks, Gretchen! Overall, Lily is doing well on the diet, but of

course, I'd like to see her do even better. She had meningitis as an

infant, and almost died. Her seizures started at about 18 months. I

thought we had dodged that bullet, but no such luck. She mostly has

drop seizures, but also has a few tonic ones. She's on Topamax and

Klonapin and has cut those meds in half and to a third, respectively

since starting the diet on March 17.

The other interesting thing is that it seems to have helped with her

endocrine issues. She has hypothalmus damage from the meningitis and

that affects her pituitary. She has diabetes insipidus and has cut

her anti diuretic hormone by two thirds. Her body temp is a bit

higher as well. It was running a little low and now seems closer to

normal.

She is still temperature sensitive, though. She had a seizure cluster

today and I think it was because she was outside for a bit and it was

over 90 today. I could tell she was overheating and was afraid it

would trigger a seizure, even though she's only had ones from temp

induced sources when she was sick.

Her diet is 3.5:1, but I think it needs to be a bit higher. I was not

as strict as I should have been when making her meals, so she got a

little more fat than the recipe called for. She gained a little

weight - she's not active at all, just starting to bear weight on her

legs - and I promised to watch the recipes. Well, she had a seizure a

few days later, after 3 weeks with no seizures. I haven't heard from

the neurologist or nutritionist about my theory, so we'll see.

Thanks again for replying, sorry for the long post. I look forward to

particpating and meeting everyone.

> > I just wanted to post a quick hello and thank you. I've been

> reading

> > the posts for a bit and have gleaned a lot of information. My

> > daughter has been on the diet since March 17, 2004 and it's been

> > overall a good experience, some ups and downs. I'll post more

> later

> > if I can get this to post. I tried before, but it didn't seem to

> > take.

> >

> > Caitln, Lily's mom.

[Guest guest]

Thanks, Gretchen! Overall, Lily is doing well on the diet, but of

course, I'd like to see her do even better. She had meningitis as an

infant, and almost died. Her seizures started at about 18 months. I

thought we had dodged that bullet, but no such luck. She mostly has

drop seizures, but also has a few tonic ones. She's on Topamax and

Klonapin and has cut those meds in half and to a third, respectively

since starting the diet on March 17.

The other interesting thing is that it seems to have helped with her

endocrine issues. She has hypothalmus damage from the meningitis and

that affects her pituitary. She has diabetes insipidus and has cut

her anti diuretic hormone by two thirds. Her body temp is a bit

higher as well. It was running a little low and now seems closer to

normal.

She is still temperature sensitive, though. She had a seizure cluster

today and I think it was because she was outside for a bit and it was

over 90 today. I could tell she was overheating and was afraid it

would trigger a seizure, even though she's only had ones from temp

induced sources when she was sick.

Her diet is 3.5:1, but I think it needs to be a bit higher. I was not

as strict as I should have been when making her meals, so she got a

little more fat than the recipe called for. She gained a little

weight - she's not active at all, just starting to bear weight on her

legs - and I promised to watch the recipes. Well, she had a seizure a

few days later, after 3 weeks with no seizures. I haven't heard from

the neurologist or nutritionist about my theory, so we'll see.

Thanks again for replying, sorry for the long post. I look forward to

particpating and meeting everyone.

> > I just wanted to post a quick hello and thank you. I've been

> reading

> > the posts for a bit and have gleaned a lot of information. My

> > daughter has been on the diet since March 17, 2004 and it's been

> > overall a good experience, some ups and downs. I'll post more

> later

> > if I can get this to post. I tried before, but it didn't seem to

> > take.

> >

> > Caitln, Lily's mom.

[Guest guest]

Thanks, Gretchen! Overall, Lily is doing well on the diet, but of

course, I'd like to see her do even better. She had meningitis as an

infant, and almost died. Her seizures started at about 18 months. I

thought we had dodged that bullet, but no such luck. She mostly has

drop seizures, but also has a few tonic ones. She's on Topamax and

Klonapin and has cut those meds in half and to a third, respectively

since starting the diet on March 17.

The other interesting thing is that it seems to have helped with her

endocrine issues. She has hypothalmus damage from the meningitis and

that affects her pituitary. She has diabetes insipidus and has cut

her anti diuretic hormone by two thirds. Her body temp is a bit

higher as well. It was running a little low and now seems closer to

normal.

She is still temperature sensitive, though. She had a seizure cluster

today and I think it was because she was outside for a bit and it was

over 90 today. I could tell she was overheating and was afraid it

would trigger a seizure, even though she's only had ones from temp

induced sources when she was sick.

Her diet is 3.5:1, but I think it needs to be a bit higher. I was not

as strict as I should have been when making her meals, so she got a

little more fat than the recipe called for. She gained a little

weight - she's not active at all, just starting to bear weight on her

legs - and I promised to watch the recipes. Well, she had a seizure a

few days later, after 3 weeks with no seizures. I haven't heard from

the neurologist or nutritionist about my theory, so we'll see.

Thanks again for replying, sorry for the long post. I look forward to

particpating and meeting everyone.

> > I just wanted to post a quick hello and thank you. I've been

> reading

> > the posts for a bit and have gleaned a lot of information. My

> > daughter has been on the diet since March 17, 2004 and it's been

> > overall a good experience, some ups and downs. I'll post more

> later

> > if I can get this to post. I tried before, but it didn't seem to

> > take.

> >

> > Caitln, Lily's mom.