Have a diagnosis, and a question (or three)- feeding issues

[Wild Lupine]

Background: DS is 19 months and won't eat solid food or anything with texture. He also has low muscle tone.

We finally got to see the feeding and swallowing specialist last week. She said DS has a high palate and enlarged adenoids. He also has a tongue sensitivity due to being on an NG tube as an infant (which we knew already).

She doesn't want to treat his adenoids yet as that would require a trip to the ENT and probably some invasion, which she feels he has had enough of already. We're trying to teach him to put food in the side of his mouth so he can gum it as his palate is too high for him to be able to mash food between the palate and gum.

So my questions:

1) Anyone else have experience helping a child with a high palate learn to put food into the side of his mouth? We keep modeling for him, but he's not imitating this yet.

2) Any idea if these physical issues could be related: enlarged adenoids, high palate, low muscle tone? Could it be coincidence for a child to have this many issues affecting feeding or are they related to something else? (He has had a full developmental assessment and his speech, cognitive, and emotional development are considered on track.)

3) I suspect we may eventually be taking DS to an ENT for his adenoids; anyone know what the exam would be like? I know enlarged adenoids often are removed but is there another way to treat them?

Thanks.

Oh, and this is OT, he started walking yesterday!

[2boyzmama]

I can't talk long...but I wanted to chime in and say to be wary of removing the adenoids before he has a FULL ENT workup. Some ENTs might just straight to removing them before checking for other issues. One thing that needs to be checked into fully is Velopharyngeal Insufficiency (VPI). Also a submucous cleft palate. A high palate could be a sign of other palatal issues (as it is in my son's case). VPI and submucous clefts can be hard to find, so if he has any kind of palatal issues (which he does) he should be referred to a cleft palate team to fully evaluate the hard and soft palate before anyone does anything permanent (like removing the adenoids).

My son has very large adenoids, but they are actually helping him swallow and helping him speak. So we are NOT removing them!

About eating...my son's issue was with tracking the food in his mouth. He had great difficulty getting the food from his lips to the back of his throat so he could swallow it. He had dysphagia in addition to very low tone and oral awareness. We found that he did much better with strong flavored foods, as well as "chunky" foods. He couldn't do purees at all, and anything that would change consistency in his mouth was a problem (like breads or crackers). Sometimes he would "lose" food in his palate and we'd find it up there hours later even. We taught him to take a drink between most bites to help with the residue (pieces of food) that he'd "lose" in his mouth.

[Wild Lupine]

Thanks! That's very helpful information. It gives me some things to talk with the feeding specialist about next time I see her. I guess it is still early days for us in terms of pinpointing exactly what is going on.