[ Post a Response | 22q Deletion Interest Board ]
Posted by melonie --Previous Message-- melonie
on 10/30/2005, 7:07 am, in reply to "confused"
144.139.33.27
: Hi. I hope to not make this to long
: winded here so please forgive me if
: I do. I am looking to find some kind
: of answers that I can understand,
: not all this mumbo jumbo.
:
:
hi liz,
My son connor is 4, with vcfs..... He had the same thing with his ears he failed 3 hearing tests and pressure tests but never showed any signs of infection. The ent put tubes in and since they went in his ears leek puss, they also found that he has low IGA which is a form of immune deffeciency, that is why they think he has the chronic infections. Just on the 5th oct connor went for palate op and they found he also had sub-mucous cleft so it was repaired.
We are lucky and he doesnt have any heart or kidney trouble. And his eyes are ok.
From what you have described of your daughter i beleive there is a good chance of her having the deletion (vcfs)
Connor was 3 when diagnosed, its a little unsettling to receive the news, but the doctors seem to take more notice and listen more when you have that genetic diagnoses.....
Alot of our kids present in many different ways, no 2 kids with this syndrome will have the excact same problems. You seem to be on the right track and the doctors seem to be helping, i had to fight the doctors to listen to me about connor.
I hope ive helped, pre diagnosis for me want spent on the internet reading everything i could about it!!!!
Good luck with the palate operation.
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