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Anne Cairns
March 13th, 2004, 01:55 PM
Good afternoon everyone
Sebastien has severe Hunter syndrome and he is also being tested for Fragile X Syndrome .
DR Clarke,s feelings are that Sebastien is too big and tall,and eventhough he is diagnosed as being severe ,should have by now aquired some words and should have picked up a bit more by now .
Any way I was woundering if any one has this diagnosis above and beyond MPS :?
Thanks Anne

Laura Brodie
March 13th, 2004, 02:12 PM
Anne,
They suspected Fragile x with Will but did not test as the Hunters came through as positive! I have had 2 boys at my school who have had this and its very similar to Hunters but not as severe on the body problem/bones. The heart was a big issue with both children and sp/lang/low tone/developmentally delayed/ severe behaviuor issues/some breathing problems and they both fell asleep all the time and were unwakable but would not sleep at night! :roll: -but both were big children for their age.
Will is within normal height range for his age but I think I have read Hunters boys get to 4ft-5ft anyway??? Will is 4 yrs now
Please let us know how the testing goes Love Laura
PS Will aquired a few words at 2yrs but during a severe illness lost them and never regained the ground! :cry: