10q deletion

Our 7 yr old was just diagnosed with 10q deletion. When she was a baby, you could put her into a sitting postion, but once she fell she would play on her tummy. She did not start walking by herself until 21 months. After that she spoke her first word. We have been doing physical therapy since she was 13 months old. She does have devolopmental delays and her speech is still hard to understand. I only wish we knew sooner. I feel like so much time has past that we could have had more help somewhere for her. Now I am just trying to figure this out and find information on it.


This discussion is related to chromosome deletion.

[jen777400]

Hello,

My daughter was just diagnosed today with 10q deletion syndrome. She has low muscle town (hypotonia), and is currently trached for not being able to breathe on her own. She was a preemie - born at 32 weeks. She's currently 7 weeks old.
Doctors have nothing to tell us - its their first time dealing with this syndrome. We're at Childrens Hospital.
Any or all advice from anyone with 10q deletion syndrome would be great.

Thanks!
Jen

[maria920]

I dont have an experience with this but there are a bunch of related posts above urs check them out!!! I wish u lots of luck with this and pray ur little one will b ok! :)

[ebmom]

I have two boys w/10q deletions. Both doing quite well now at 6 & 8...Just came across your post and wanted to reach out. The UNIQUE web site (for rare chromosomal disorders) has some general information. We have not connected w/others but I have learned there is a yahoo group focused on 10q deletions and have sent a message to join. Could be good to connect. Will keep you and your daughter in our thoughts.

[6blessedme]

I have an almost 5 year old twin boy who was just diagnosed with 10q 26.3 deletion mutation copy gain.  What does all this mean? I'm not finding a lot of information.  My anxiety level is sky high.  I did check out UNIQUE.  What are long term effects?  They seem to vary depending on the location.  My little has so many symptoms I'm glad to have the diagnosed but at the same time it scares me to death.  Would love to connect and find support.  

[msb33]

We have a 14 week old foster son diagnosed with both a 10q deletion and polymicrogyria. We have big decisions to make. Trying to connect with other parents. How do you join Yahoo groups? thanks