Anyone else have a child with chromosome 15q11.2 deletion?

(5 Posts)
Rosesandchocolate Tue 19-Feb-19 12:16:51

Just found out my 3 year old has this. Don’t have much info on this at all and there doesn’t seem to be much out there.
He has epilepsy, severe speech and language delay, still not potty trained, hyper mobility, which affects his joints, he’s aneamic, suffers from a few blood disorders. Is on the “small side” he will be 4 next month and wears 2 yr olds clothing. List could go on. Don’t know if this is all related, or any info would help, I’m waiting for the apppointment but just need some facts, personal experience etc in the mean time. Thanks in advance x

OP’s posts: |
dimples76 Tue 19-Feb-19 22:32:02

Have you had a look on Unique's website - rarechromo.org?

They may be able to link you up with families whose children have the same deletion

Rosesandchocolate Wed 20-Feb-19 14:48:16

Thank you!

OP’s posts: |
hazeyjane Wed 20-Feb-19 15:57:32

Hello
My ds has a different genetic deletion, with very few children around the world with the same diagnosis. I haven't found the Unique Facebook page very helpful, but there is a small group for ds's condition (when he got his diagnosis, the geneticist said that if there isn't group, to start One!)
I see there is one for 15q11.2 here

I often find as much support here for specific things that can be common across conditions e.g. hypotonia, speech difficulties, autistic behaviours, toileting etc

x2boys Fri 22-Feb-19 20:02:19

No but my son has 16p13.11 deletion,he has autism and learning disabilities.

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