[ Post a Response | 22q Deletion Interest Board ]
Posted by Pam Farris
on 3/31/2009, 9:47 am, in reply to "Re: 22q11.2 distal deletion"
97.85.130.113
We just got word that our 10 yr old adopted daughter has 22q11.2 distal deletion - we have not had an appt yet with Dr since this diagnosis has been made. What can you tell me about this?
--Previous Message--
: My 3year old daughter has distal
: 22q11.21 deletion syndrome. She was
: born 11 weeks early and stayed in
: the hospital 17 weeks. We have her
: primary care doctor and four
: different types of specialists that
: follow her case. We received her
: diagnosis two weeks ago and we were
: also told of six known cases. We
: have five children total and three
: of them have delays. The youngest
: daughter had the genetic test done
: and it was negative for the
: deletion. We are still trying to
: find the reasons for her delays.
: Our son will likely be the next
: child we have tested. I can tell
: you what we see in our daughter but
: some of it may be related more to
: her early delivery.
: Jody
:
: --Previous Message--
: I have an 11 month old son that was
: diagnosed with a 22q11.2 distal
: deletion today. The doctor said
: there are only 6 documented cases in
: the world. I am looking for any
: information I can find regarding
: this condition. My two other
: children are now being tested. My
: oldest also has Pierre-Robin
: Sequence.
: I know how important it was to find
: other families dealing with the same
: thing when we first found out about
: her PRS. I would like to talk to
: other families whose child has a
: 22q11.2 distal deletion.
:
: Thanks,
: Kristy
:
:
:
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