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Soft palette brought up AGAIN

Forum: Children with Special Needs


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May 5th, 2010, 11:31 AM
Effervescence's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,791
does anyone else feel like they go in circles ruling stuff out and then bringing the same things up?

I mentioned today at speech therapy that I really don't think Jonah can physically suck. He can't drink through a straw, and when he pretends like he is drinking from a cup he tries to mimic the slurping sound that we make but he blows out instead of drawing air in. When he drinks from a sippy cup, he tips his head all the way back, and grunts etc like it's a lot of effort. We had extreme feeding issues, and I thought the doctors were crazy when they told me Jonah was only eating three or four ounces because he would gobble up 8-10 from a bottle. As soon as we switched to bottle (which are not only easier to suck, but also a different kind of sucking) he wouldn't have anything to do with the breast, and he started gaining weight almost immediately. I think he couldn't physically move the muscles to get the milk from my breast.

Anyway, I spilled all of this to the speech therapist today and she said he might have soft pallette issues. That is the first thing we ruled out. And we've ruled it out over and over and over again. His dad had an incomplete soft palette. It was reconstructed with surgery. Jonah has had every kind of scan, x-ray, and exam that you can imagine that would detect this, and they all show that it is normal. The therapist said that the muscles might appear to be intact, but they might be "lazy" or "floppy" which wouldn't turn up on these tests. Basically, the muscles in the back of his mouth might not work to open and close the nasal passages the way they should be to make certain verbal sounds and to suck. We were concerned about him being able to blow, because that was the key symptom that his Dad had- at his third birthday, he couldn't blow the candles out, and MIL decided then that something was wrong. But Jonah can blow, so we used that as confirming that those muscles were okay, but I'm realizing more and more that he can't suck, which is probably just as important.

Sorry for the long explanation, I just wanted to share for anyone there who has a child with similar issues.

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May 5th, 2010, 02:24 PM
quietsong's Avatar Just Another Slacker Mom
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Location: Missouri
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Ugh! I hate the cyclical stuff... We've definitely been through some too. Maybe he's just got mild low tone with those muscles? That's a tough one, and I hope they can help you get some answers.

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May 7th, 2010, 09:41 AM
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If it's something that wouldn't show up on the tests how would they even handle it?
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May 7th, 2010, 07:35 PM
Effervescence's Avatar Platinum Supermommy
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Anna, I wish I knew the answer to that

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