Re: ...Tracey-Skyler

[Guest guest]

In a message dated 8/25/2004 8:53:41 PM Pacific Daylight Time,

rich.sue.hill@... writes:

Are these readings still happening Tracey? I think there is a later post

from you saying his ketones have now gone too high? I always check bhbs twice

(like one straight after another) if readings come out to be not quite as

expected, as I have found over the years that the home kit can give some dicey

levels, and always feel safer when I double (sometimes even triple) check.

This is a very good idea, ...particularly when the range seems SO varied.

Am out of blood ketone sticks til tomorrow so haven't done any recent levels.

The day the levels were off the chart before bed, I thought to myself, " Well

if this diet works, it's gonna work tonight. " Then Skyler went on to have

20 seizures....

Has he lost any weight to explain the v high bhbs? Burning body fat at the

same time as caloric fat in a highish ratio can send them over the top, and

sometimes the ratio needs lowering down until weight has stabilised again.

Well, he had a growth in height and yet another, albeit small decrease in

weight

so I had raised his calories which I think may have set all these

seizures in motion somehow.

's bhb level on the home test kit varies from about 2.7 (morning) to

4.0-4.5 by late afternoon/night time, depending on his activity level, but

usually within these ranges.

Has the twitching stopped, have you changed anything? That sounds like more

of a 'normal' variation in level than Skyler's 2.9-6+ in an eight hour

period. Thankfully, we have seen no more twitches but our nights are still

awful.

Basically Skyler went from 0-3 sz/night to an 'average' of 18. I don't

recall if I mentioned that we are in the midst of a phenobarb wean. It's been

going on since March and we've successfully dropped 50 mg, decreasing 8.1

mg/every two weeks. Each drop has brought a flurry of increased seizures for

3-5 nights til things settle down again. AND, those flurries haven't been

NEARLY as bad as the past six nights.

Can't imagine how tonight is going to be, but will give a bit of valium via

the g-tube if things are bad again...this poor kid

needs to get some REST!!

He is still having bm 'issues.' Had the three days of constipation followed

by a day of diarrhea followed by two more days w/o a poop. We've been to

the doc...had lab work...checked for infections, etc etc but other than

excessive fatigue (most likely attributed to his Myasthenia), nothing showed

up.

Thank you so much for all your help...toward me and so many others. Your

knowledged is matched by your generous spirit! (So if you have any great ideas,

please share them!!)

Tracey