Finally some answers after 5 years!

March 28, 2010

I think I posted a very long message on here a few months back wondering if I

should give up trying to find out what is wrong with my son. If I didn't, I

will just say that I was upset because we took my 5yo son to a neurologist

trying to see if he could figure out why my son was not swallowing all his food

and why he was not moving his tongue right. As usual we got no answers except

that he was just born like this and there was no point persuing the matter any

further to figure out what is physically wrong. I already knew a swallow study

would finally be done within the next couple of weeks so I decided that if that

showed that everything seemed normal, I would accept it that that is just how my

son is. I didn't expect answers becasue we were constantly told he can swallow

he just doesn't want to.

So we went to his swallow study appointment yesterday and guess what. He has at

least 3 things wrong with his swallow that have nothing to do with his lack of

tongue movement or lack of sensation. I can't tell you what all she said was

wrong because I don't remember. I was too flabergasted that they FINALLY found

a problem. She did say that the esophogus is opening far enough to let food

down so it won't get stuck. I think she said it is not really the normal amount

but it is enough that he doesn't choke. So that is a good thing.

She said he is only swallowing the food that is on the middle of his tongue.

Anything that goes to the side just stays there, which we already knew. She

said whatever is wrong with his swallow make it that whatever would take you or

me 1 swallow to get it down would take him 3 or 4 swallows to get the same food

down. She was thiking that it is just too much work for him and that is why he

doesn't swallow it all. Then she went on to say she doesn't think he can feel

that there is food in his cheeks so he doesn't know to go get it with his tongue

to swallow it. Also with the limited tongue movement, it is hard for him to get

it. The SLP said she thinks there is also a motor planning issue going on where

his brain is not telling his tongue that the food is there because he can't feel

it and when he does try to move his tongue it is like foreign to him because his

brain is not telling him what order to do it in or how.

He is also soon going to start speech therapy at school. We will be working

with him at home trying to get him to swallow more and move his tongue more.

What a relief to have proof so I don't have to hear people constantly telling me

he doesn't swallow because he doesn't like the food or doesn't want to.

REBECCA

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