[ Post a Response | 22q Deletion Interest Board ]
Posted by Janelle
on 7/15/2008, 2:47 pm
12.216.73.13
My 9 year old daughter (adopted when she was 3 days old) was just found to have this rare chromosome "nick" and we were told there is nobody with this specific micro-deletion in some genetics database. I am looking for another family with a child with this specific microdeletion (or to find an adult.) She has no physical signs (that is why we are just finding this out after we pushed to get the chromosomal micro-ray test done), but she has developmental delay, learning disabilities, ADHD, anxiety, behavior and social issues, some obsessive compulsions, emotional regulation issues, mood swings, oppositional defiant issues (mental health types of concerns), constipation/gastro issues, bladder and reoccuring yeast infection issues, movement disorders, and wears some foot orthotics. We are in the process of getting her neuro-tests re-evaluated now that we know this genetic piece...as well as checking out kidney and endocrine system. Anyway, I JUST started my search and would appreciate any ideas on where else to network or any other ideas to consider in providing the best care so my daughter can be as successful as possible.
Many thanks,
Janelle
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