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

[popsycal]

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

[Merlot]

Thanks popsycal - will do

[Keane]

yes it is bumbelions dd

[chonky]

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

contact a family

[Merlot]

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]

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]

Yes, it does Tamum

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

[tamum]

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]

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

[Merlot]

. bumblelion?