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Peachy, tell me more about your ds4, NF1 and how it may affect your other ds.

1 reply

misdee · 15/08/2008 18:10

i had to google.

does ds4 have thw cafe au lait marks then?

will they start to look again at the dx of your other ds'?

and very pleased heart scan is all clear

OP posts:
Peachy · 15/08/2008 21:34

bas has 2 of the marks yes, ds3 has a few also....a nd ds1 has 3 at least but as he is funny about being naked I had to look last week and din't knw before

I ahve growths, and so does dad- quite se vere ones, that have left himm with leg problems

paed we saw (heart one) has referred Bas to our suual Paed (shouldn't she just be assigned us a her caseload LOL?) to follow up- but the symptoms are similar to asd so we shall have to see

bas has also been referred to the paed for growth problems but he is, imo, absolutely fine

The good news would be NF1 can improve more than ASD long term..... wouldn't that be worth a MN party!!!!!

Anyway.... how you feeling?

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