[ Post a Response | 22q Deletion Interest Board ]
Posted by Amy in MI on 4/12/2006, 7:52 am, in reply to "daughter with 22q13.3 del." My daughter Laura was diagnosed with 22q deletion (I'm guessing it was probably 22q.11 - the Dr. never told us.) when she was 15-weeks old. She's 8 now and I can tell you there is hope! Laura has needed heart surgery (to repair a VSD) , surgical repair to a couple of inguinal hernias, and dental surgery. As far as learning, she's doing OK - but this year for the first time (2nd grade) , we're enrolling her in special education. Although she struggles - particularly with math and other more abstract concepts, she's way beyond a 2-year old learning level. I don't think she's that unusual, although I can't really tell you what's "typical" _ (except for the broad fact that the vast majority of these kids will have learning challenges) Also on a side note, I would recommend that you pay very close attention to Ellie's teeth. Laura needed some teeth extracted due to decay when she was only 2 1/2 years old. We treated her the same as our other four children and they all (still) have nearly perfect teeth. Afterwards, I questioned a geneticist and she said that - although they don't know exactly why, many children with genetic disorders also have dental problems. That was one of those: "I wish someone had told me" issues, so I thought I'd mention it. If you or your wife feel like chatting, please feel free to reply or you can e-mail me directly by clicking on my name-link at the top. Also, Mark on the board is willing research answers for people. He has a special interest in immune issues. Unfortunately, the board has been a bit quiet lately - I hope people are still visiting. I wish they'd talk! But there are still some of us, and we're all in the same boat - just looking for support and trying to do the best for our kids. --Previous Message--
64.108.150.107
Hi Jeff,
Good luck, and post again
amy
: Hello, are 1 year old daughter Ellie
: was just diagnosed with 22q13.3
: deletion. My wife and I have been
: on the internet, and are overwelmed
: with the amount of information.
: However, we don't know what may
: really apply to our daughter. We
: understand that all children develop
: different, and only time will tell
: what lies ahead for us. Some of the
: information we are reading is very
: tough to take, and we would really
: like to talk to someone that is
: experiencing the same thing. I have
: read on the internet that most
: children never get past a 2 year old
: learning level?? We have Ellie in
: physical/speech/swimming therapy
: weekly, are there any other
: suggestions? What does the future
: look like? Thank you - Jeff
:
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