Re: To (from Rhonda)

[Guest guest]

Hi ,

I'm not sure if I have followed the entire conversation on how

is doing, but my words of encouragement are " keep seeking and you

will find. "

The cause of the seizures in the early morning can definately be a

mystery. In the past when Shan would have an early morning seizure

we would increase her calories and they disappeared. Several months

ago when we decided she was gaining too much weight which resulted

in changing her calories she had more seizures. But, I don't know

if the increase in seizures was a direct result of decreasing her

calories because prior to when she started having more frequent

seizures (every 2-3 days)the seizure activity was slowly creeping

back. Over 2-3 months we tried many things in regard to fine

tuning. One thing that was really interesting was that when we

started giving calories back, the time of night when the seizure

took place changed. According to calories Shan would have a seizure

at 10PM, 1AM or 4-5AM. We literally saw the seizure pattern change

with the calories. We ended up giving back her calories (1600) but

we did not see the seizures resolve. Interesting, the seizure

pattern changed for the better when we went camping and the whole

family slept in a one room tent. She went from having a TC every

other night to having one every 4 days. When we got back from

camping she went to bed in her own room and had a TC. We moved her

to our room and the pattern immediately changed to a TC 11 days

later (I forgot her trileptal that night :-(...my fault). We are

guessing that anxiety has been causing her seizures. Why she is

anxious I don't know....probably due to normal growth changes.

>

>At some point we did try monitoring blood sugars. They averaged in

the 80-95 range (too high). I quit using that as a gage because we

never monitored the blood sugars during the many months her seizures

were nearly gone. Her blood sugars probably were the same during

the better times. Also, the strips we have are a year old and I

don't know how accurate they are.

I saw some questions about fluids. When Shan first started the diet

she was sensitive to how much fluids she got. When we limited the

fluids her seizure activity improved. Six months after being on the

diet the amount of fluids was no longer an issue. Ever since she

has had unlimited fluids.

As for ratio, Shan got down to a 1:1 ratio accorinding to her

ketones at night. For the past month she has been at 1:1 and her

ketones are 80-160 at night. Given 's past history with high

ketones, I would do the same approach with as I did with Shan.

As you lower the ratio you may see those seizures go.

We are trying something with Shan over the next week. We are once

again going to try and wean her of the keto diet. This morning I

dropped her ratio to .5:1 and I'm making sure that her foods are

ADHD approved (low salycilate). The only food I'm adding to bring

the ratio down is oatmeal and rice. Last week I started giving her

tofu and she loves it. She gets it with every meal. I never

realized that tofu was so loaded with nutrients. I'm hoping and

praying that the ADHD diet will be the " trick " to a successful

wean. If it does the trick then I will know that non-ADHD foods can

not only cause her to have behavior issues but also seizures.

Rhonda

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