10q deletion

We just found out that our daughter has the 10q deletion. She just turned 7 yrs. We do not know what the next step is or where to look for advice. She has already been getting services for her developmental delays. She has already had 2 eyes surgery for strabimus. She has low muscle tone that we have done physical therapy. Her head is on the smaller size and she has the prominent nose bridge. We also found out that she has abnormal brain waves that may lead to seizures later in life.

[MrsSpendALot]

Our daughter was also diagnosed with a 10q deletion; more specificaly 10q23.3.  She was diagnosed when she was 2 yrs. old and will now be 5 in January.  She has been having Speech, Physical & Occupational Therapy since she was 6 mths. old and recently we have added Behavioral Therapy to this since she's having problems with understanding "right" from "wrong" and the usual things that go along with being 5.  She was diagnosed this summer with Strabismus in both her eyes but refuses to wear the glasses!!  She also has the prominent nose bridge (or lack thereof) but is not small for her age.  She does have a heart defect -  Bicuspid Valve Stenosis & continual respiratory infections and ear problems.  They have said she has a "special mucus" that is thicker than most and that is what drains out of her ears - after 3 sets, so far & probably what causes her respiratory infections to turn into pnemonia (pneumonia) so quickly.  I don't know if your daughter has a partial deletion of a specific band but I haven't had ANY luck so far in finding many others out there with this deletion.  I'd love to discuss more with you about similarities and maybe things we've done to help or what we might have to look forward to, since your daughter is older.  

[3beautifulbabies_1atrisomy18angel]

I hope this will help, there's an organization called Noah's Never Ending Rainbow. If I remember correctly it is a communtiy of families with similar concerns. I have had contact with them & they are wonderful people. If they cant help, they will find some way to connect you with ones who can. I wish you luck & joy with your beautiful children.