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Posted by sarah on 5/30/2007, 11:50 am, in reply to "Re: digeorge " --Previous Message--
72.209.159.33
I have a son that is 16 months. He has been getting regular colds since November. In the past couple of months they have turned into pnemonia and RSV. We have had eight hospital stays in 2 months. He has been really irritable day and night lately. He pulls his hair now. He sits and rocks in position, and is often hitting his head on things. If he is sitting in front of a wall, he sits there and rocks his head back into wall and just laughs about it. He was diagnosed with DiGeorge last July. Doctors are just now deciding that DiGeorge is the reason he can't seem to get better after he is off antibiotics every time. We are in Kansas and there aren't any doctors here that can treat DiGeorge. At least, that is what I've been told. We were told that our only option was Denver. Denver has refused to work with our Kansas insurance, so we can't go. Does anyone know of any other place we can go? I heard there was something in Atlanta, GA. I would like to know if anyone has information on that.
: well at night its been hard to get her
: to sleep , she always seems so hyper
: and then when she does go to bed she
: is always waking up . I cant even
: leave to room for anything or she
: knows . she could be completly out
: but still knows when i get up . and
: when i say behaviorial problems well
: she wakes up and she hits herself
: and she does it other times as well
: when she wants something . she used
: to pull her hair but that stopped
: and now she hits herself. she
: throws tempers all the time and also
: will hit me and laugh . im not sure
: if this is part of the syndrome or
: her just used to getting what she
: wants by screaming . I try to let
: her scream and not give in but i
: live with my parents so its not a
: easy thing to do here because they
: dont wanna put up with it sadly to
: say . I am currently trying to get
: her a phych eval but the doctor is
: booked for months so im just waiting
: . Also does your son talk ?
:
:
:
: --Previous Message--
: Hi Stacy,
: I have a son who is 14 and I have
: often thought that he has autistic
: behaviours. Interestingly enough,
: we have a psychologist who has
: visited our son and he has advised
: that a lot of his symptoms are very
: similar to Aspeger's as well.
: Our son, Alex has had sleep issues
: and currently has behavioural
: issues. I am not sure if you are
: asking something specific about
: sleep and behavioural issues, but my
: understanding is that it is quite
: common.
: Regards,
: Dawn
:
: --Previous Message--
: hi I have a 5 year old daughter
: which
: has digeorge syndrome . Im not sure
: if she has partial or complete . I
: didnt know there was a difference
: but reading this tells me theres so
: much more i dont know . well she was
: born and had to have emergency heart
: surgery and i didnt even know she
: had dgeorge til a week or so later
: after testing due to her having long
: fingers and the heart complication .
: since then she has had speech ot
: and pt therapys and she still does
: not talk . I read a article where
: one little girl didnt talk and then
: around 5 she just started talking
: with therapy . however i am having
: the hardest time getting my daughter
: to talk and Im not sure if because
: she cant talk she screams all the
: time and its unbearable at times .
: the doctors say its cus she is
: frustrated since she cant talk and
: then her therapists tell me that she
: is not connecting the words from her
: brain to her mouth . Alot of people
: ask me if she has autism also . And
: to be honest i dont know all the
: symptoms of digeorge and if the way
: she acts is from that or could be
: autism . Does anyone have more
: information on behaviorial problems
: or sleep problems due to the syndrom
: or any information would be great .
: thanks
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