By going on my experience with Tylers health problems. I believe for children diagnosed with-in the under 10 age range the parents might be alot like I was when Tyler was that young. They feel overwhelmed and completely at a loss, so they trust the doctors to know what to do. Therefore they never find us.
I'm not saying all parents are like this, because obviously some of them have found us. However, until Tyler was diagnosed with MM, I just assumed the doctors would know what was best and never questioned them. When they first mentioned MM they said there was no way that was it because we were not of Japanese desent, he was not in the age range, and that he was a boy. I didn't do any research until a month later when it was mentioned again, and then only to find out why the doctors would question the diagnosis.
This whole thing was an eye-opener for me. I have to wonder how many parents out there are like I was and have no clue when they need more info, or how to find it?

Here's a theory:
Since the stats support alot of children as patients, and they go back to '69, they could not be out looking for info themselves, and the Net was smaller and hard to access for decades.
(trust me where I say that if I had not worked for a pharma company in 89-90 I would have never been able to even research the disease!)

So, now all those kids are grown up, and they are all better and prefer to leave MM in the past-
Mine is an example: I'm not sure she ever thought about MM after her hair grew back in other than occassionally talking about it if I brought it up, and if it weren't for some migrains and birth control concerns it never would have. Me, as the parent, was the one to remind her of the risks and to suggest a specialist now that she is pregnant (YES, indeed she is, 22 weeks).

The end result is that NEWER patients, and the rare older patient or parent of one, find the Net search engines and do research.
I agree that MANY parents of patients are desperately clinging to their doctor's advice and overwhelmed for a long time- I am unusual that I desire any and all information from anywhere I can get it when faced with something serious.

Then, out of that group, many are indeed shy or desire to be uninvolved, so they avoid message board posting.

This creates an anomaly in the numbers that a message board creates.

Another thought:
Is it possible that more recently the percentage of adult diagnosis' have climbed? I have wondered about that myself...

S
PS Annica:
My daughter's best friend's name is Annica, and she is half Dutch and half Indonesian on one side, French Canadian on the other :-D
I am glad your daughter is doing well- it is the hardest part of this disease, helping your child through the process...   s

Hi Everyone,

I suspect that the skew is caused by the fact that children, particularly in the 0-9 age Group will not research themselves, and their parents, such as in my case, went to the internet at the time their child was diagnosed but this site did not exist at that time. It is only recently that out of interest I did a new search and came across the site, but this was driven out of curiosity rather than any concerns I had given that my daughter is progressing well. I could certainly concieve of not discovering the website and continuing in ignorance simply because my daughter continued to react well to surgery and all follow-ups with the surgeon indicated continued success.

Cheers