RE: Need some advice!

[Guest guest]

Maybe your daughter needed the extra cream you were giving her.

Yes, she would have been getting more calories, but she also would

have a higher ratio. I think it is a good sign that she had good

seizure control even though she was gaining weight a little to

fast. Are you measuring her ketones? Hang in there; I think

control does vary early in the diet.

> My daughter (3 in August) has seizures (mostly drop seizures, but

> occational tonic ones) secondary to meningitis. She started the

diet

> on Marc 17th and has had some success. We even had a three week

> stretch with no seizures, the longest yet. That stretch ended

after a

> meeting with her nutritionist who thought she had gained a little

too

> much weight and wanted to lower her calories. I said I had

probably

> been giving her too much fat ( a couple of grams here and there)

and

> would more strictly adhere to the diet.

>

> So - of course, three days later, she has a seizure. Then 6 days

> later and then 4 days later and now 2 days later. Not a good

trend.

>

> Has anyone else been through something like this? Does the

control

> come and go? Should I think about upping her ratios (she's

supposed

> to be at 3.5:1)? Any thoughts would be most welcome.

>

> Caitlin

[Guest guest]

Gretchen - thanks so much for responding. I was pretty disheartened

to see such a flurry after that three week period.

I spoke with both the neurologist and the dietician. The neuro said

to go back to what was working. I thought that sounded good as well.

We are going to try to get back to where we were and not worry about a

little weight gain. I hope we can get back and that this recent

flurry will be behind us.

I have been reading a bit here and have a couple of questions if you

don't mind? I use the ketostix to measure Lily's ketones (which are

very stable and almost always large) but there are other methods,I

know. Some parents use numbers - what method are they using? ANd is

a blood ketone monitor advisable? The neuro thought the sticks were

adequate.

Thanks in advance!

> Maybe your daughter needed the extra cream you were giving her.

> Yes, she would have been getting more calories, but she also would

> have a higher ratio. I think it is a good sign that she had good

> seizure control even though she was gaining weight a little to

> fast. Are you measuring her ketones? Hang in there; I think

> control does vary early in the diet.

>

[Guest guest]

Caitlin,

I would go back to what you were doing when all was well. Did you quit

giving the extra fat and cut calories at the same time? If so, that could

have been a significant calorie reduction. If you did both, I would go back

to just cutting out the extra fat. Is your daughter gaining too much weight

to where she is getting chubby or just gaining weight to where she is now

around her ideal weight? The seizures can come back when the calories are

not sufficient. This happened with our daughter. We increased the calories

and the seizure quit.

Rhonda (mom to Shan, age 9, keto/atkins for over 2 years)

My daughter (3 in August) has seizures (mostly drop seizures, but

occational tonic ones) secondary to meningitis. She started the diet

on Marc 17th and has had some success. We even had a three week

stretch with no seizures, the longest yet. That stretch ended after a

meeting with her nutritionist who thought she had gained a little too

much weight and wanted to lower her calories. I said I had probably

been giving her too much fat ( a couple of grams here and there) and

would more strictly adhere to the diet.

So - of course, three days later, she has a seizure. Then 6 days

later and then 4 days later and now 2 days later. Not a good trend.

Has anyone else been through something like this? Does the control

come and go? Should I think about upping her ratios (she's supposed

to be at 3.5:1)? Any thoughts would be most welcome.

Caitlin