Hello everyone! . I am joining this group because I am so scared my son has one of the MD's.
Let's just say I feel as if I am waiting for the other shoe to drop.
Keaten born in March of '06. Got first shots in May, then spent the next 21 days in Oakland Children Hospital, almost died, blood transfusions, spinal taps, CT, x-rays, the whole 9, at only 8 weeks old. (they say was not a vaccine reaction, but we're not sure)
After that, his liver reads were totally out of whack, for months. So we did all of the hep tests, because of the blood transfusions. all clear.
Then finally at 1 1/2 he had a liver biopsy, all clear.
During this time they noticed his CK was elevated (and stayed elevated) for months and because there were other pressing issues with him, like 6 months of GERD! and the liver stuff and they skated around the MD issue, but talked about it in hush tones, you know doctors they get so specialized and wont go outside their comfort zone.
Anyway, he is almost 3, and still gets so exhausted. He sleeps through the night 8:30 pm- 6am and still everyday takes a 4 hour nap. If he misses his nap the next day he is toast, and sleeps all day.
I have told docs at Stanford about this and they joked if only they could sleep so much.
Of course with the MD, in the air I have read about it.
It is hard not to see things that make me worry. Like the extreme fatigue after activity and just in general.
Walks on his toes, a lot. His calf muscles do not feel like his sisters, kind of rubbery and when he is really tired he sleeps with his eyes open.
He always goes up steps left foot first one at a time, still cant get the two foot gait down.
He also crashes a lot, always saying... "I okay Mommy"
I guess I joined just to talk to other moms about their experiences. I wrote the MDA group that is in Modesto,Ca (close to us.) and the lady said they were ready to see him at UC DAVIS, whenever. She said she had sent his info along to the docs there and they said to bring him in.
But I am nervous. Another doc said time will only tell. He really has been such a pin cushion for so long, My husband and I decided it was time to just enjoy him for awhile without stressing out.
(I don't tell him how worried I am, but I know he knows)
argh. He also keeps having an elevated body temp. That stays at 99-101, but I am told not to worry.
Thanks for listening. I would love to hear others early experiences with MD.
I really feel like I need to talk.