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Posted by stacy --Previous Message--
on 5/31/2007, 8:04 am, in reply to "Re: digeorge "
71.58.111.135
hi , my daughter when she was younger would bang her head off things and laugh also . she still does things similar and thinks its funny . she used to do alot of repetive stuff like while playing with toys she would just keep pushing the buttons over and over before the music would even be done . she has gotten alot better but about three months ago she started pulling her hair and laughing and when i tell her no she laughs and keeps doing it . i had taken her to a behaviorial specialist and he had said that it was probably outta frustration . I read some things about it and if when your child does some things like this you can try and take his hand away and show him something else to do and just calmly tell him lets try something different to do . Im not much of a help in that area because i have been trying to get alot of help as well and its not that easy when one doctor tells you to go to another and they just keep sending you all around . my daughter is almost 6 now and still does not talk however she says a few words like ma ma and ba nanan and a few other sounds . my daughter was born in bethlehem pa and when she had emergency heart surgery she was flown to st christophers hospital for children in philadelphia . thats where dr digeorge discovered this syndrome . she has seen many doctors there but we never met dr digeorge himself . most of the doctors there i would have to say are wonderful but i think anywhere that you go your going to be reffered to alot of other doctors . Just like me at the time im getting reffered to different doctors and then they send me to others and its a long road but every child with dieorge is different and its kinda a day by day thing but feel free to email me and chat if u need to . stacigurl24@yahoo.com
: 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.
:
: --Previous Message--
: 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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