[ Post a Response | 22q Deletion Interest Board ]
Posted by Megan Jones on 10/16/2007, 2:38 pm, in reply to "Re: newborn may have 22 deletion"
99.233.50.249
Dear Megan I my name is Megan too. I also have a son that was born in 2005 and had enlarged Kidney at birth. Following that they did a fish test on my family and I am the carrry of 22Q11 which I didn't even know I had it until my son was born. Shortly after the enlarged Kidney my son Garrett had seziures and was rushed to sick kids. As we spent weeks on end at Sick Kids to find out why he was having the seziures. The doctors did many Test and finally found out that Garrett my son has eplisey as well. I know that it can be very difficult to find out but since I've known about this dignosis that I have started educating the public about it. I know how hard it is to have a child with 22Q11 I do feel for you. I hope your son is doing better know! Sincerly Megan Jones
--Previous Message--
: Hi! I too am very new to this.My son
: was born with heart failure which
: came as a horrible shock to us.After
: his surgery his fish test came back
: positive for 22Q11Deletion
: Syndrome.That was a couple months
: ago and only now am I starting to
: feel like I need to learn and hear
: from people who have experienced the
: same.All symptoms vary from child to
: child.I just don't want to live like
: everything my son does is attributed
: to Di George.
: Anyway,we waited about a month for
: the test results.And as for the
: waiting game you have to wait until
: your daughter begins to develope.We
: are quite fortunate to have an
: occupational therapist that comes
: into our home(because he has feeding
: problems)and eventually a physio
: therapist.Just make sure you connect
: with social services and youth
: services for help.Take Care,M.
:
:
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