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Submucous Cleft Palate help   Message List  
Reply | Forward Message #396 of 810 |
Re: Submucous Cleft Palate help

Whst type of surgery are they doing?

We (3 of us) all have submucus clefts and no one has suggested surgery
to close them. THe speech may be helped by a velopharyngeal
tightening, as opposed to a cleft repair.

I am just throwing suggestions out there, since submucus clefts really
only cause severe speech problems if there is VPI involved. ANd the
solution to VPI is a surgery to tighten that sphincter.


--- In sticklersyndrome@yahoogroups.com, "claykenziesmom"
<claykenziesmom@...> wrote:
>
> Hello! My name is Lachelle and I have a 3 yr old little boy that
has
> a submucous cleft. He definitely has PRS, but we've never gotten a
> sure diagnosis of Stickler's because he does not have vision,
hearing,
> or joint problems. But his speech is being greatly affected by the
> cleft, and we are fairly sure we are looking at another surgery.
The
> problem comes in here: he still has a mickey button, from earlier
> feeding issues, but we haven't used it in about 2 months. We are
> going to see the surgeon tomorrow about button removal. Question:
> Has anyone had any experience with the cleft repair surgery and
> recovery times? I'm afraid they won't remove the button if he needs
> surgery on his mouth.
>







Wed Apr 19, 2006 3:09 pm

jennaevmooney
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Message #396 of 810 |
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Hello! My name is Lachelle and I have a 3 yr old little boy that has a submucous cleft. He definitely has PRS, but we've never gotten a sure diagnosis of...
claykenziesmom
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Apr 19, 2006
1:01 pm

Whst type of surgery are they doing? We (3 of us) all have submucus clefts and no one has suggested surgery to close them. THe speech may be helped by a...
jennaevmooney
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Apr 19, 2006
3:10 pm

Hi! My name is Heather & 2 of my daughters & I have Stickler. My middle daughter Paige had PRS also. She had a cleft-palate repair. The recovery from the...
matt russell
mattnheatherr
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Apr 19, 2006
5:49 pm

Hello!!! Our daughter has had two repairs done to her cleft palate. The first one was when she was 18 months old and then a pharengeal flap when she was 3....
Ann-Marie Fosselman
anniefosselman
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Apr 19, 2006
9:06 pm

Thanks so much! So she lost interest in food after the repair? How long had she been eating? Clayton has only been eating for about 2 months, but now he...
Lachelle Staggs
claykenziesmom
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Apr 19, 2006
11:06 pm

She had been in feeding therapy for about a year prior to the second surgery. In that year we had gotten up to eating yogurt, pudding, some baby foods. After...
Ann-Marie Fosselman
anniefosselman
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Apr 20, 2006
12:11 pm

Wow! Clayton also had a trach, but it was removed shortly after his first birthday. I was just concerned that he would be unable to eat for a while after the...
Lachelle Staggs
claykenziesmom
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Apr 19, 2006
11:04 pm

You know I didn't even think about him losing interest in food. Paiges mickey was still in place when she had her palate repaired. I bet she wouldn't have...
matt russell
mattnheatherr
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Apr 20, 2006
7:28 pm

I' m not 100% sure that they will be doing a surgery. I'm just trying to find out what kind of recoveries are typical after a cleft repair, to see if it's...
Lachelle Staggs
claykenziesmom
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Apr 19, 2006
11:09 pm
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