[ Post a Response | 22q Deletion Interest Board ]
Posted by liz Hi Melonie, I just thought of one other thought. You said Connor has the low IGA. My daughter seems to spike a fever and vomit uncontrolably for 24-48 hours, then just as fast as the whole thing starts it is over. She is lethargic, eats nothing, doesn't use the bathroom etc. Does this sound like something that I should bring up with the genetic center? I am trying not to make to much out of what could be coinsidence and assoicate with something more serious. But with her history to date there is so much coinsidence to ignore. Liz
on 10/31/2005, 9:16 pm, in reply to "Re: confused"
65.25.17.231
Thanks for answering. You are the second person I've spoke to that stated their kids had nothing but trouble with the tubes. Do you feel your son was worse or better off for them? I am really considering at this point now not to have them placed, but I don't know. There just seems to be so much going on and so hard to find any information out here. I understand the palate operation, it seems though that it would be painful. Is there alot of pain associated with the surgery? I've pushed our visit with the surgeon up to this week versus the end of Nov. so that she can enjoy christmas and not be miserable.
Thanks again for answering.
--Previous Message--
: :
: --Previous Message--
: 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.
:
: melonie
:
:
Message Thread:
« Back to thread