and anyone else, your thoughts

[Guest guest]

Below is an email I sent to the OT we use from EI. She is the person who

has been with him the longest and seems to be a better resource than our

DTs (who I will be changing). I am puzzled if my son has apraxia and

would appreciate your thoughts as veterans of this. One historical

note: I have not supplemented yet because he recently had surgery. I

was never very good about his vitamins from the dr. because I thought

they'd complicate his bowel troubles (big regret now). I have since

started giving him then and seen positive results in both speech and OT

areas. I plan on supplementing after GI visit.

Without further adue, the email:

OK, so, since I am calling on a number of resources I am sure I seem

near manic with my questions but here goes:

1) Re: Gastro: from past research, my own history, and 's, I do

believe he has celiac disease. I was puzzled for a long time because 1)

He was tested for allergies and they came back negative (this was early

on when he could not tolerate cereal). My understanding is that these

tests often come back negative in infants because their immune systems

are underdeveloped. 2) He hardly seems like a failure to thrive kid but

that is likely because he is a decent size BUT he has dropped weight or

not weighed quite enough in the past plus, we watch what he tolerates in

feeding him and his diet is so limited that he probably does not get a

ton of gluten in it. I also suspect my IBS is actually celiac and am

getting tested by my gastro next week.

2) Speech: The Question of Apraxia: Does he or does he not have it? I

understand, at his age, I will likely not get a diagnosis or risk

getting an incorrect one. But the other side is, if he does have it I

need to know as soon as possible since the earlier the better. My

understanding of apraxia is that it is a muscle control issue. These

kids have low tone issues (though some sound like their tone issues are

more severe than 's) and they have good receptive skills but

simply can't express. This is why I am thinking you are thinking he does

not have it. My guess is that your take is 1) Who knows why he has low

tone, but he does (my guess is celiac or some other malabsorption). 2)

He does have receptive or seeming receptive issues. My guess is that

your take is the receptive is due to auditory processing issues and

checking that out and doing the oral motor stuff will either rule in or

out the apraxia.

3) Question regarding receptive: Since the tubes were put in the

private therapist and I have noticed him not identifying things that he

knew before the tubes but properly identifying new stuff. Could that be

because he is now hearing them correctly and he was so used to hearing

them incorrectly (even with that tiny bit of hearing loss) that he now

does not recognize the sound and has to relearn it?

4) Information about speech: He is definitely making more sounds of all

kinds( and even old sounds more often) since the tubes. He has been

saying (repeating from my lead mostly) " WOW. " He also says " Ra " like a

lion. I have been making faces at him and he has attempted to copy me (I

made a face where I hid my lips and he tried.) That may not make sense

but I can show you the face in person.

Thanks much!

Liz