RE: reflux?apraxia?DSI? questions

July 27, 2003

Kathy,

Yes, of course my boy is getting his services thru EI. His SLT has

helped tremendously with oral motor skillsand language development.

OT hasnt helped at all, but he enjoys going to " the gym " so we go.

Again, my questions are regarding how to determine whether he's

afflicted with a neurodevelopmental disorder or with a type of phobia

which may have developed due to undiagnosed reflux. I feel that a

diagnosis will (or should be) important in determining what type of

program to start him in and what other types of therapy to try

(behavioral?). Yes, I am careful with the terminology I use with my

ins. co, but I relax here and use the words with the best meaning for

what I'm trying to say... I have read " the Late Talker " (and feel

that he is not apraxic) but he will go see Dr Agin for an eval late

in November -- probably too late for our decision on schooling but

she should be able to help us figure this out. He can go to a

handicapped program thru our school system but, again, that isnt

something I want to pursue if he really just needs to catch up once

we get past his oral phobia as I call it. There are more appropriate

private pre-k schools in my area that can provide him with the

individual attention he would need if his problems are simply the

oral phobia. But if he does have a neurodev. disorder then we of

course would opt for the handicapped program.

Again, any insight to my questions would be appreciated!

>

> While you are trying to figure this all out is your child getting

any

> services through EI???? I would think that getting near the age of

3 that you could

> have him tested by the public school system to see if he qualifies

for a

> pre-school hand. program where he would get a more individualized

setting than a

> " reg " . pre-school. I understand that treatment could be different

depending on

> what the diagnosis turns out to be, but in the meantime you could

get things

> rolling to have those options available if you so choose .

>

> Also, I think that using that " developmental " word is not a great

idea as

> most insurance companies will not cover certain therapies, etc if

it is listed as

> developmental....when my children were diagnosed apraxic it was

explained to

> me that it was a neurological condition and that the worse case

scenario was

> that they would not speak.....it does have to do with oral motor

probs and my

> kids did have to do " exercises " with their tongue and lips -as the

SLPs would

> put it so that they would understand- and they still do....they

also did not

> chew the correct way as they could not move their tongue around to

push the food

> around in their mouths...consequently, they chewed mostly in the

front of

> their mouths and choked quite often....I never put any of these

early symptoms

> together..along with the lack of babbling, not being able to lick

lollipops or

> the top of a soft ice cream cone, etc...I never heard of apraxia

and thought

> what they were doing was a type of twin talk thing.....

>

> I also feel that many issues can overlap....so that my kids can be

apraxic

> along with DSI and any other neuro probs like CAPD, etc etc ..What

did the

> neurologist say??? Can your son suck through a straw, blow bubbles,

etc...although

> I am sure your SLP has tested these areas already....how long were

you using

> the Pro-EFA????

>

> ..and as someone just wrote you do eventually get to see that first

small

> light at the end of the tunnel...it's just that some of our tunnels

are longer

> and darker than others....and my twins do talk now...we are still

behind other 5

> year olds in the expressive lang. area, but between the EI, speech

in

> pre-school hand, private speech, OT, PT, Pro-efa and Pro-epa etc

etc, this list and

> the advice I got and used, (yes, THE LATE TALKER BOOK), they are

entering a

> reg, Kindergarten this year and we will see how that goes....

Kathy (NJ)

July 28, 2003

I agree that so many issues overlap. That may be why the professionals have so

much difficulty correctly diagnosing our children. And of course, without the

correct diagnosis, there won't be the correct therapy mix. Good luck

Selena

[ ] reflux?apraxia?DSI? questions

While you are trying to figure this all out is your child getting any

services through EI???? I would think that getting near the age of 3 that you

could

have him tested by the public school system to see if he qualifies for a

pre-school hand. program where he would get a more individualized setting than

a

" reg " . pre-school. I understand that treatment could be different depending on

what the diagnosis turns out to be, but in the meantime you could get things

rolling to have those options available if you so choose .

Also, I think that using that " developmental " word is not a great idea as

most insurance companies will not cover certain therapies, etc if it is listed

as

developmental....when my children were diagnosed apraxic it was explained to

me that it was a neurological condition and that the worse case scenario was

that they would not speak.....it does have to do with oral motor probs and my

kids did have to do " exercises " with their tongue and lips -as the SLPs would

put it so that they would understand- and they still do....they also did not

chew the correct way as they could not move their tongue around to push the

food

around in their mouths...consequently, they chewed mostly in the front of

their mouths and choked quite often....I never put any of these early symptoms

together..along with the lack of babbling, not being able to lick lollipops or

the top of a soft ice cream cone, etc...I never heard of apraxia and thought

what they were doing was a type of twin talk thing.....

I also feel that many issues can overlap....so that my kids can be apraxic

along with DSI and any other neuro probs like CAPD, etc etc ..What did the

neurologist say??? Can your son suck through a straw, blow bubbles,

etc...although

I am sure your SLP has tested these areas already....how long were you using

the Pro-EFA????

..and as someone just wrote you do eventually get to see that first small

light at the end of the tunnel...it's just that some of our tunnels are longer

and darker than others....and my twins do talk now...we are still behind other

5

year olds in the expressive lang. area, but between the EI, speech in

pre-school hand, private speech, OT, PT, Pro-efa and Pro-epa etc etc, this list

and

the advice I got and used, (yes, THE LATE TALKER BOOK), they are entering a

reg, Kindergarten this year and we will see how that goes.... Kathy (NJ)

New book on late talking! http://www.speechville.com/late.talker.html

July 28, 2003

Do you really feel OT hasn't helped? What makes you say that? Mark had such

awful reflux as an infant that they were going to do a fundoplication on him.

He's on adult strength Prevacid twice a day. With all the throwing up and pain,

he was never interested in eating anything. Did that help make him orally

defensive, maybe. Why take that chance. It was noted with his EI eval(both an

OT and feeding/speech therapist noted) that his mouth muscles and how he did

certain activities were not right. My particular feeling on the subject is that

for some children, their muscles and nerves are so weak that they have reflux,

weak facial mouth/jaw/tongue, etc. For some children, the apraxia and the

reflux are related, for others it is not. How is your child around different

lights? sounds? textures?

Selena

[ ] Re: reflux?apraxia?DSI? questions