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My son was diagnosed with linginal apraxia. I am not sure if it is the right

diagnose. We just know he can't move his tongue right and if you tell him to

swallow he doesn't. He can and does swallow his food without choking. He is

getting better at it. He used to pocket his food in his mouth and we would have

to get it out for him becuase he couldn't spit his food out either. He can't

move his tongue side to side and we are thinking he might not be able to feel

with his tongue either.

He is 5yo and we have been dealing with this all his life. He had an NG feeding

tube in for a while because he was failure to thrive. No matter how much he

seemed to eat he would lose weight. The doctors have pretty much tested him for

everything they can think of to find out why he would lose weight and came up

with nothing other than his oral issues. For the longest time we would just be

told he can move his tongue he just doesn't want to or he can swallow his food

he just doesn't want to. It is so frustrating. He tries so hard. It is

obvious he can't because you tell him too and you can see him struggle to do it

but he can't. My reply to people saying he can swallow his food he just doesn't

want to is then why does he ask for more of the same food. He knows what he

likes and doesn't like. It is not that he is not swallowing it because he

doens't like it.

Anyway, he is some day being sent to a pediatric neurologist FINALLY. We have

no idea how soon it will be though because no appointment was made yet. Can any

of you tell me if this doc will be able to say for sure if he has nerve damage

to his tongue or what his other problems might be? What kinds of tests do they

do? Do they draw blood or anything like that? What reason would they have to

draw blood on him?

He says some words wrong but now we have found that he has sugnifigant hearing

loss in both ears. They are assuming it is due to fluid in his ears but I

wonder if it something else too because he has lots of words that he can't say.

He hears you wrong. Like, toast is roast or chew is shoe or something like

that. We were thinking he couldn't talk right because of his tongue but maybe

it is due to his poor hearing too. He did have PT and OT and Speech therapy but

isn't receiving any of that since he was 3 because he no longer qualified under

early intervention.

Does any of this sound familar to any of you?

REBECCA

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