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Anyone know anything about/anyone with Soto's Syndrome?

(12 Posts)
Merlot Thu 24-Feb-05 14:52:02

Its just been mentioned as a possible dx ds2 by the Paediatrician in a letter to the geneticist we are about to see.

I've looked at this but just wondered whether anyone else had anything extra to add.

I have to say we can tick an awful lot of the boxes and the prognosis doesn't seem that bad, but I dont want to get up any false hopes

popsycal Thu 24-Feb-05 14:53:05

Merlot - I odn't know anything about it at all but do remember another mum posting that her child has this.....
about 6 months ago.

Might be worth a search...

Pamina3 Thu 24-Feb-05 14:54:14

Message withdrawn at poster's request.

Merlot Thu 24-Feb-05 14:54:21

Thanks popsycal - will do

Keane Thu 24-Feb-05 15:29:21

yes it is bumbelions dd

chonky Thu 24-Feb-05 17:13:11

Have you seen the Contact a Family website? They've got a bit of blurb on it & support group details.

contact a family

Merlot Thu 24-Feb-05 19:54:28

Thanks Chonky I hadn't seen that site before - although interestingly ds2 doesn't seem such a good match on this site as he does on the other, but that maybe because on the other site they go into more detail?

Bumblelion - if you are around it would be good to hear from you.

tamum Thu 24-Feb-05 20:07:23

Merlot, that does sound quite plausible, doesn't it? Good too in that the gene is known, so you might well get a definitive test. Good luck when you see the geneticist

Merlot Thu 24-Feb-05 21:06:16

Yes, it does Tamum

Do you know if it is linked with the 15th chromosome at all?

tamum Thu 24-Feb-05 21:14:22

No, Merlot, the 5th in all cases I as far as I know, so it sounds as though it would be unconnected if that's the diagnosis. Let us know how you get on

Merlot Thu 24-Feb-05 21:29:31

Sure Tamum, will do Appointment is in two weeks time.

Merlot Sat 26-Feb-05 23:58:06

. bumblelion?

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