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Hi ,

So sorry to hear 's in hospital. I hope things get sorted

out soon. I have not been reading much on the list and was

surpised to see the post about . I'm thinking of you all

and 'willing' the dr.s to figure out what's going on quickly.

Keep us posted.

Love and best wishes.

Saro

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Hi ,

All I can think of so far is stress causing the insulin change. His body is

definately going through excess stress right now. Is a thin boy

where his body could be burning muscle mass resulting in the glucose

increase? Also, the stress his is going through can cause him to burn

excess calories hence leading to muscle break down if he has no excess fat.

If this is the case he may need more than a 50 calorie increase. Also,

could the increase in meds he is presently on be causing his metabolism to

increase causing a need for more calories? My questions are based on the

theory that he is possibly burning muscle. Is receiving any IV

infusions that could possibly have glucose in it? Also, could it be that

the new problems (infection in foot) could be causing the elevated glucose

to continue? As Patti said, a metabolic pediatrician might be of help.

Yes, we are enjoying our new home. We have been in moving transition for

about 8 months (delayed in Philippines and then 3 month trip to U.S.) and we

are all ready to stay in one place. We live on a college campus where there

is a lot of wild life (wallabies, occasional koala etc.) which is a big

change from living in Manila. Shan is attending a gov't school (grade 2-3).

This is a big change for I have been homeschooling her for the past 1 1/2

years due to the uncontrolled seizures. She's delayed socially and her

ability to concentrate can lag at times due to increased sleep seizures.

But, she has a very nice teacher. I just hope that the kids will love her

inspite of her differences. She's doing okay with no day time seizures but

she can have a sleep seizure every 1-6 days. We recently increased her

night med. but had to go back down on it due to it caused her to be very

negative, strongly over react to minor things, mood swings, and continuously

disobey. Today is the first day after decreasing the med and she had a

great day but tonight she had a strong sleep seizure. Some times we can't

win either way.

As for the hospital, we have only visited the doctor once (last

October/November). The doctor was nice and was willing to work with us. We

plan to visit him soon again.

Keep strong, .

Rhonda

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,

After I ended my last post, I thought of one more thing I wanted to tell you.

Not meaning to be critical of your neuro or your keto team but.... just wanted

you to know that our clinic made us commit to at least six months on the diet.

I'm wondering if three months is long enough to really know for sure? There are

so many issues in the beginning.... especially if meds are clouding the picture.

Also, their bodies will tend to really fight against being in ketosis for about

the first six to eight months. Is your doctor a strong proponent of the diet? Or

did he think from the beginning that it was unlikely to work? Do you have a good

dietician? I know how much work it is for you..... and you must be frustrated at

this point after not seeing it helping. Just wondering if there is anything we

can do to help you sort through the possible options for fine-tuning.

Patti

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,

Are these her meal stats.... per meal? If that is per meal, she is getting 24

grams of protein per day? If so, for her weight (40 lbs, right?), that is a LOT

of protein. I figured this can't possibly be her DAILY stats because she

wouldn't be getting enough calories. If her protein were figured out at the

usual 1 gm per kilo of body weight, she would be getting just barely over 18 gms

of protein per day..... or 6 per meal (if you're doing 3 meals a day). Are you

using a mealplanner program .... or dietician-planned meals? Or exchange system?

How many calories is she getting? Just curious. Katera is very close to the same

size....... 39 lbs, 42 " tall.

Patti

----- Original Message -----

's protein, fat and carb allotment is p-8. f-48. c-4.

As of 2 days ago we went to p-8. f-48.5 c-2.8

Her levels were all within range- carnitine etc.

Her latest testing of everything was 1 week ago. All was normal.

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