Cleft palate

Vida - posted on 11/01/2008

Hi. :) I love your photo. The speech issues are definitely something to be expected. My daughter has been in speech therapy since the age of around 1, and she's 6 now. Doing great, has made wonderful progress.
Nice to "meet" you.

Marie - posted on 10/30/2008

We are in the middle of the "p-flap debate". Drew has a history of sleep apnea and a p-flap almost always causes at least mild sleep apnea, so they are worried about doing this durgery on Drew. After cancelling the surgery due to abnormal blood work, testing for months to diagnose two bleeding disorders and waiting to get back on the surgery schedule, we finally had a bone graft in January so they can use a speech bulb with him if they decide the p-flap is too risky. After the graft healed, we went to clinic and now we have to have a nasoendoscopy to determine if his palate is short and how it works to see if a p-flap would even help. That will be in a week. I think they also want us to do another sleep study. After that, they will weigh the risks and benefits and see what they think we should do. If you get any good or new info about p-flaps, let us know!

Jennie - posted on 10/30/2008

Jake is actually doing remarkable with his speech now, still delayed, but a lot better. He's done the private speech through the childrens hospital for just over a year. And we also got him into the preschool through our school district (which is fabulous. And free~they consider him as having a disability) since he turned 3. He really didn't start talking until he was 3 1/2. He may have to have the p-flap surgery, but we won't know until his progress is assessed again. Anyone elses' kids have that surgery?

Marie - posted on 10/30/2008

I really just assumed you had your son in speech therapy! I guess that is my bad if you don't! I would agree with Kathy, though that it is really important for most cleft kids (I hate to say all, just in case). Drew is still struggling and still very hard to understand, but I can't imagine if we had not been in speech for the last 6 years how it would be...

Kathy - posted on 10/29/2008

My son Dillon was born with a cleft lip. His palate was totally intact but the roof of his mouth does not arch up it hangs down. We took him to speech therapy at 2 year sold and it was the best thing we ever did. He LOVED it and he gained so much confidence. He didn't become a full talker until almost 3 but now we can't ever get him to stop! Speech therapy is covered by most medical if the Dr. says it's from the cleft, it's a great way to spend an hour a week!

Best of luck!

Marie - posted on 10/28/2008

We struggle with speech. My son Drew is 7 yo. He was born with a complete bilateral cleft lip and palate. We learned last year that he has a genetic syndrome that caused the cleft. It also causes weakness in the oral/ facial muscles which compounds the speech delay.



i do think, as you said, that every surgery changes how the muscles, etc work together and it is almost like starting over- very frustrating. Maybe we can all share things that have helped our kids with speech in this thread...