Question - help, please

[Guest guest]

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had a muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher (susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious regression in strength and energy level following a very brief illness last fall. He did not have any cognitive loss. He had a fever for a few days and then basically lost his appetite for the next 2 months and his energy level went gradually down as well as his muscular strength. I know that I've read from you all that illnesses can bring on crisis states with acidosis and the stroke-like episodes, but Asher's deterioration was more gradual. It was not an abrupt loss of strength or energy or motor skills. Since January we've been able to get him back to where he was like before he got sick in the fall - we got him to drink milk and pediasure and gain weight and PT 3x a week added to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and he's hardly drinking his milk and pediasure. And, he doesn't want to participate in PT and he's becoming really clingy again. He did have a cold a week ago and then got another one this last weekend but it seems to be clearing. No fever. B/c of his lack of energy again and his lack of appetite, I'm beginning to wonder if we're starting the downhill slide again. It's so hard, b/c I know most 'normal' people would say 'oh he's just not feeling well, so he's not hungry or he doesn't have energy'. That may very well be true, but I don't know.

My question is: have any of your kids shown a gradual downhill slide after an illness rather than a sudden loss of skills or a sudden loss of cognitive abilities?

Anne R