myson-andrew
10-02-2006, 11:00 PM
I had to re register to post so I am here as myson-andrew now, aka 4kids4me.
We are working with an "almost" diagnosis now after 8 years undiagnosed! This summer Andrew was diagnosed with Riley Day Syndrome (or at least something that is symptomatically identical to it) Reason he can't have it in name is we are not Jewish and they can only genetically test with 100%accuracy in families of Ashkenazi Jewish decent. Andrew is identical to a child with this though and all his doctors now acknowledge it as his clinical diagnosis. He just had a bone density scan done this week so we can track his bone strength as kids with Riley Day often develop osteoporosis. Andrew is also suffering from Adrenal Insufficiency now and depends on daily steriods and loading doses when he is sick or in crisis. He is in Grade3 now!! and is adjusting to his new aide and classroom slowly but surely.
Alison
We are working with an "almost" diagnosis now after 8 years undiagnosed! This summer Andrew was diagnosed with Riley Day Syndrome (or at least something that is symptomatically identical to it) Reason he can't have it in name is we are not Jewish and they can only genetically test with 100%accuracy in families of Ashkenazi Jewish decent. Andrew is identical to a child with this though and all his doctors now acknowledge it as his clinical diagnosis. He just had a bone density scan done this week so we can track his bone strength as kids with Riley Day often develop osteoporosis. Andrew is also suffering from Adrenal Insufficiency now and depends on daily steriods and loading doses when he is sick or in crisis. He is in Grade3 now!! and is adjusting to his new aide and classroom slowly but surely.
Alison