sclerosis?

June 6, 2006

I really should acquire different reading habits. Perhaps I'll take up

reading fiction for a change. I think I may talk to the orthopedic surgeon

at Duke. I have heard good things about him. A little boy we met at VJGC

is having surgery for dysplasia tomorrow. Maybe he knows more about

Shwachman-Diamond Syndrome. Another thing on my list of things to do. Buy

an orthopedic medical textbook. The list goes on.

Anyway..I looked up sclerosis, osteosclerosis. While I am not 100% certain

it is what I think it is.. I am left with many, many questions. Remember

when I asked the dentist, the hem and all of the specialists-(think I asked

the ortho on our first visit) about and ph having that rare

internal tooth resorption (different than the normal root resorption kids

have during exfoliation) (yes, they both had it-remember the only two SDS

kids in the study and that Toronto knew of to have it ~HUGE SIGH~) and if it

was possibly indicative of something happening in their entire body,

possible we were missing the larger picture.. Did the fact that one tooth

was literally eaten from the inside (looked PERFECT on the outside) give us

a heads up on their bones? COULD their body do the same thing to their

bones as it had done to their teeth!? He pointed out the sclerosis on

.and then on J and 's is definitely worse..

Do any of you have ANY knowledge or experience with sclerosis of the distal

femur? If you do, could you share it with me? I am sick to death of new

crap popping up. I have my letter composed to send out tomorrow.just have

to refine a few spots and send away. Thought I would look up some stuff on

S & J's ortho issues. I knew J had the sclerosis and the dysplasia.I've just

not really done anything as far as reading. I guess now that they both have

evidence of it, I need to check it out more.

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

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