Has anyone heard of this??

[golfqueen123]

Hi ladies, just a little background I have a 6 year old son with Down Syndrome and he has been seeing a speach therapist as he has a very very limited vocabulary (mom, da)  he has always attempted to try to speak but its always sounded like he's talking out of his nose, to this day he cant blow out a candle or do a whistle, and when he tries all the air comes from his nose. The therapist took a picture of the inside of his mouth and mentioned to me submucous cleft palate. I did read all about it but first hand experience always helps more! Thanks for everyone time!

[nenedawn]

i dont have any experience with it but i have heard of it. (i find it a bit unreassuring that it took them six years to notice it)

[golfqueen123]

Sorry the speech therapist that noticed he has only seen about 8 times as he only goes once a week and just started like 2 months ago. None of his other doctors I don't recall every really checking anything in his mouth, but I guess they say it can be easily missed. It can't hurt to get him checked out especially if there may be something else hindering his speech, but I'm like you, he's seen so many doctors could everyone miss it? Thanks for the response!

[Elyssa414]

I haven't heard of that. Bump!

[mandee1503]

No experience, but hope you get some answers!

[arkansasmama08]

i haven't heard of it. is it fixable by surgery or what do they do for it? I hope they can find you some definite answers and a course of action! I can't think of anything I hate more than a bunch of unanswered questions and I've had my fill of them lol

 

[britmichele]

never heard of it.... Hope it brings good things tho! My 4 year old has downs :)

[darbyakeep45]

Quoting mandee1503:

No experience, but hope you get some answers!

[CameronsMommy23]

I hadn't heard of this either. Can you see a specialist who can explain it?

[jjamom]

I have heard of it, but don't have any experience with it.  I would ask for a referral to an ENT or Oral Surgeon for a consultation (not sure which would handle this).  Does he have any feeding issues?  

[Jaimefoxmom]

I've hear of it, also heard that its fixable with surgery (never a pleasant thought). It's the way the Downs kids mouths are shaped, small mouth with a larger tongue. I heard a horrible story years ago where a Downs child had a problem like that and they had part of his tongue surgically removed! That sounds a little to cruel to me. My doughter is 19 and parts of her speech has those tendencies but having taken speech they taught her to use her mouth in certain ways to get her words pronounced clearer. Good luck to you