Hello all!!! Our daughter, Lauren, has Sticklers and she too had the sub-mucous
cleft palate and Pierre Robin sysdrome. She had her first palate repair at 18
months old and a Pharangeal flap done when she was 3. Prior to the two
surgeries her speech was unintelligible. After the second surgery and another
few months of speech she is doing great. She has no hyper-nasality and no
speech impediments. It was a long journey and she is now 6 years old and in
Kindergarten with no speech issues. We were so pleased. I will keep all of you
in our prayers. We are now hoping to graduate from using a gastrostomy tube for
supplemental feedings. She still has some oral oversions to some textures.

Ann-Marie

Lori Taylor <daveloritaylor@...> wrote:
I would also like to see additional info on speech. We're adopting a
young lady that was diagnosed with SS at age 13. We've done extensive speech
therapy but they've stopped therapy saying she's hit a plateau and can't go any
further. It's still very difficult to understand her and she cannot function in
public. She has a sub-mucous cleft palate. I've been told her cleft palate has
nothing to do with why she can't talk but nobody can say why she can't?!?! It's
frustrating for all of us to try to understand what she says.

MOM (Lori Taylor)

Sara <saracarter69@...> wrote:
My name is Sara, 2 of my kids were born with Sticklers along with the
cleft palates and small jaws. My son is almost 9, and my daughter is
almost 5. I'm just curious if anyone elses children have really severe
speech impediments? My sons is really bad, and hes been in speech
therapy for 7 years. Hes also had to orchea (sp?) surgeries to try and
help with it, but neither one has worked. Just wondering if anyone has
any ideas on how I can help him, hes so angry because of it.
Thanks so much.
Sara

SMILE ~ It makes people wonder!
A cheerful look brings joy to the heart, and good news gives health to the
bones. Proverbs 15:30

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