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

[Merlot]

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

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...
xx

Thanks popsycal - will do

yes it is bumbelions dd

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

contact a family

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.

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

Yes, it does Tamum

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

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

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

. bumblelion?