Re: Finally some answers after 5 years!

[Guest guest]

Just a quick note. More later.

Find an SLP who is trained in Beckman stretches---to improve his tongue

mobility.

Warmest wishes,

Barbara A , M.S., CCC-SLP

Executive Director, Help Me Speak, LLC

410-442-9791

[ ] Finally some answers after 5 years!

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

[Guest guest]

, I'm glad to hear some answers are coming through. For us the MB12 shots

were amazing at waking up her mouth sensations. it's still metabolic. just

because they've identified the areas of concern doesn't mean that's all there

is. Do try the metabolic angle---it is almost always implicated in neurological

disorders--particularly developmental ones--and closer to the other end of

life's spectrum when more toxins have accumulated. Pretty much anyone whose

neurological issues are not caused by physical trauma---and even then--there's a

lot you can do bio medically and therapy wise to address the problems. Keep us

posted.

Elena

________________________________

From: pepperderr <pepperderr2@...>

Sent: Sun, March 28, 2010 10:54:15 AM

Subject: [ ] Finally some answers after 5 years!

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

------------------------------------

[Guest guest]

While my son didn't have a swallowing issue, he did store food in his cheeks

because he just didn't realize it was there!  I had to start cooking with

really strong flavors for him.  He couldn't chew properly so I tended to either

not give him meat like chicken, or i would grind it and add some spices for his

mouth to notice it was there.  What helped a little bit was brushing the inside

of his cheeks and his tongue with one of those spin-brushes from colgate.  I

would do this just prior to sitting down to eat and it would " wake up " his mouth

a little bit.  We do lots of exercises to get his tongue moving better.  His

favorite is to just sit and lick an ice cream cone....I hold it so he has to

stick his tongue out!  it takes a few tries but once he gets going it's great.

I'm glad to hear that now you know what is wrong, you can start moving

forward.  Just goes to show you that moms know what's right and what's not with

their kids...doctors really have to start working with us as opposed to against

us and for them to say that there is no point in pursuing the matter is just

downright wrong.  I hope it all goes well with you and your son now!

 

________________________________

From: pepperderr <pepperderr2@...>

Sent: Sun, March 28, 2010 1:54:15 PM

Subject: [ ] Finally some answers after 5 years!

 

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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