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Posted by Nancy Brunetti on 7/8/2007, 1:48 pm, in reply to "Re: Are kids with digeorge able to talk "
205.188.116.145
Hi Stacy, I would try the Childrens Hospital of Philadelphia (CHOP) website. They are very knowledgeable. I called their phone number and they sent me a bunch of articles and I paid $10 for a booklet. I have found that you need to go with your gut feeling. Keep educating yourself as a lot of docs do not know a lot about the syndrome. I will be happy to call you if you want to e-mail me your phone number. My e-mail is dannanjak@aol.com. Nancy
--Previous Message--
: thank you so much . yea i been reading
: about how it can be so many
: different reasons why she does not
: talk and i have taken her to the ent
: but they didnt do much for me at all
: and i dont know who else to be
: taking her to now , but i do feel
: that there is something wrong
: because when she trys to say words
: they sound like they are coming from
: the back of her throat . is there
: certain tests they take to determine
: if she has the leak in the throat .
: i know she has low mucsle tone for
: sure but the speech therapists dont
: seem to be helping .
:
: --Previous Message--
: Hi.My son is 6 1/2. He did not
: start
: talking until 2 years ago.
: Something clicked with him. He did
: very well with sign, but we had to
: work hard with him. He also has a
: cardiac condition which affects his
: airway. Try taking your daughter to
: an Ear Nose and Throat doctor and
: have her evaluated if you have not.
: A lot of kids with DiGeorge have
: muscle weakness in their mouth,
: called VPI (velopharangeal
: insufficency) even though they do
: not have the traditional cleft
: palate that accompanies DiGeorge.
: My son also has mandibular nerve
: paresis, nerve does not work, a
: small throat, a leak in his voice
: box. Every child is affected
: differently with the syndrome.
: Maybe there is a medical reason you
: are not aware of. I hope this
: helps. nancy
:
: --Previous Message--
: my daughter autumn is 5 years old
: and
: has been goin to speech therapy
: among others since she was about a
: year , however we cannot get her to
: talk . she says the word mama and
: more very rarely and they say she
: has the potential to talk but yet
: she hasnt yet . Im just curious if
: this means she is never goin to talk
: and if kids with digeorge cant talk
: or its just some cases?
:
:
:
:
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