Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Ray wrote: > Now to my question, is 17 years old and she seems to > want to sleep all the time.She usualy goes to bed around 10:30 and if > I let her she will sleep until 1:00 in the afternoon.Even when I do > wake her up,she wants to take a nap as soon as she eats breakfast. Have you looked at her blood sugar? If my children go to bed without eating a snack (complex carb snack or corn starch) and then sleep very late, their blood sugar continues to drop and after a while they reach a point where it is quite difficult for them to wake on their own. The longer this goes on the worse it gets. You might try giving her a snack at bedtime, and the waking her early in the morning to eat and see what happens. If her BS is dropping thru the night, then she might also benefit from corn starch in a snack at bedtime. This might help her to wake up feeling better with more energy, and not be in such a deficiet energy and blood sugar wise. Typically, people with mitochondrial disease don't handle fasts well, and many need a snack at bedtime to get thru the night time fast. > My > question is,should I wake her to eat? Definately - I would give it a try and see if it makes a difference. Going that long without food each day, can't be having a positive impact on her energy level and low blood sugar can result in excess sleepiness. > Also,can you sleep so much that > if only makes you more tired? If I do wake her up,she acts like it is > all she can do to keep her eyes open.All suggestions appreciated. Does she take co q or carnitor? If so you might also try giving her morning doses early with some type of food and help her get moving faster. I would definately be checking out her blood sugar though, from what you are describing, I'm very suspicious. ------------------ Mel wrote: > Just a question for some of you. > Would the Pituiturity Gland be directly affected by Leigh's complex 4? Just my theory, but I think that people with complex IV have a higher incidence of pituitary dysfunction, or so it seems. The pituitary gland is a high energer user and thus quite mitochondria dependant. Pituitary dysfunction is seen with all types of mitochondrial disease. It is also an unforgiving gland...... if ever insulted or injured, it does not usually recover. > It is Atrifying. The neu7ro is advising DDAVP as a treatment. Do any of you know weather this treatment is advised? My daughter is pan-hypopituitary, that means that she has very little pituitary function left. We must supplement with all the hormones that the pituitary would normally control. When she was quite young she was diagnosed with diabetes insipidus - where she was unable to concentrate her urine. DDAVP is the synthetic form of vasopressin, the naturally occuring hormone that would normally help you to concentrate your urine, and not get dried out. She was treated with this for many years. It is fairly safe, as far as I know, and we saw few side effects. She now gets regular doses of replacement steroids and this seems to keep her DI in check. Diabetes Insipidus is just one of many of the diseases that can manefest when there is pituitary dysfunction or atrophy. Have they evaluated his thyroid function and adrenal function as well? I would be concerned about these as well, as growth hormone and blood sugar. Jeannine Quote Link to comment Share on other sites More sharing options...
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