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Posted by stacy --Previous Message--
on 5/19/2007, 12:40 pm, in reply to "Re: Are kids with digeorge able to talk "
71.58.111.135
hi thanks for replying . Do u kno the sings that i would look for as to her having the sub mucous cleft palate and the pharalyngal flap. i had contacted a cleft and lip palate team in the area where i had just moved and the waiting list is not until the winter . Is there a specific doctor that i would take her to to have that checked out or is the cleft and lip palate team the ones i should be seeing . like i had said i had taken her the the ent and then she had hernia surgery so the ent went in and cleaned her ears out and they also put tubes in and did not tell me and i found that out when i went to a hearing test appointment for her the floowing week at a different outpatient office where she has been recieving speech therapy . I feel like i just keep getting told to go to many different doctors. Also she will not sleep alone and even let me go in a nother room with out her or a shower . I am so exausted anymore and i was wondering if sleep disorders can be a part as well of the syndrome . thanks for ur time
:
: --Previous Message--
: hi , i recently took my daughter to
: a
: ent specialist and asked if she had
: any type of cleft and they said that
: she didnt that her arch was high but
: they said that is not whats causing
: her not to talk . but i disagree but
: i dont get anywhere and i feel that
: something is wrong because she
: understands everything i say and she
: does try and say a few things but it
: always sounds like ee and ba a ma .
: they said that i should take her to
: a neurologist because they said she
: is not connecting the words from her
: brain to her mouth . but i dont
: understand how thats possible
: because like i said she understands
: things and when she sees somehting
: like a bannana she will try and say
: it, so it seems like that would be
: connecting the words but notable to
: say them .
:
: --Previous Message--
:
: --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?
:
: My son couldn't say anythign but
: mamam until he has his submuscous
: cleft palate repaired at age 2 1/2
: then his speech took off. He is five
: and still needs therapy for throat
: sounds but it was amazing. Have you
: south a second opinion from a cleft
: clinic type atmosphere?
:
:
:
: My son had a sub-mucous cleft palate
: repair at 3 and a half, that didn't
: help and at 6 years had a pharyngeal
: flap repair and miracle of miracles
: he can now talk. It has taken along
: time and alot of work on his part,
: but 2 years after the surgery he was
: assessed at having 85% of normal
: speech and will eventually achieve
: 100%. Don't give up, it is a long
: and winding road, but well worth it
: when you are finally telling your
: once none speaking child that he
: needs to quit talking for a while!!
: We still laugh about that.
:
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