McCune Albright Syndrome?
Answers: Hi there:
Yes, I own a son with McCune Albright Syndrome. He is almost 14 now and we first notice something wrong at around 6, but it wasn't actually diagnosed for another year and a half. The first symptom we notice was that one testicle was much larger than the other, so manifestly not a symptom your daughter would share :) However, in talking beside the doctor, we realized that he also had probably have cherubism as a baby, but we had missed it.
I own talked with several people who have this or who hold children with it and there seem to be little that is "normal". I've been told that it's deeply unlikely that he will develop more bones lesions (yes, he has FD) than he currently have and that they don't develop past teenage years, but I've talk with people who speak that their lesions continue to return with worse and they get more of them, even though they are middle age adults.
My son also have precocious puberty, which was kept in check beside medication until it was a more appropriate time for him to enter full-on puberty. He did not have cafe au lait spots, nor does he very soon. He also had accelerating bone age, so that his bone age be 3 1/2 years more advanced than his chronological age. This also was halted next to the medication, although it couldn't be reversed. We have never seen a geneticist, since I be told that this is a genetic mutation that they believe happens when the mom is pregnant and that it cannot be passed on to offspring or would not hold shown up in other family member. Having said that, however, doctors have been extremely interested within an extensive family history and in his siblings. Although he have quite a lot of bone disease, he have never broken anything, which has the doctors floored. I say it's because we offer him organic milk :)
The people who appear to know the most about this are at NIH (National Institute of Health) in Bethesda, Maryland. Because it's so infrequent, no drug companies do research, as it wouldn't be profitable. But our government does! And, if your daughter were to move about there for treatment, they check EVERYTHING and it doesn't cost anything becasue the government pays for it. If you budge to the website below and click on "all related clinical trials", there is one for a screening and colloquial history, which basically means they only just check her out thoroughly and decide with you if anything further wishes to be done. I don't know if you live close enough that it would be easy to capture there, but I really recommend writing to them.
Also on that site is a link to the MAGIC Foundation, which might be of assistance. I hope this has helped some and apposite luck!
Why did i bleed?
How to treat a chief injury?
Cartilage Piercing Problem?