RE: Apraxia--Haleh -- Josie

[Guest guest]

Hi,

I should have mentioned that we are GFCF too - actually due to bowel disease

we are on Neocate only (GFCF hypoallergenic food - amino acid based) I am

printing out your test rx wich coincide w/ a coupe we already planned on. Once

we get to our next baseline, we are doing 2 weeks of intensive potty training -

not adding anything new - in the b/g of May - will do blood draws then. If you

ever have extra time (haha) and can email the xidative stress stuff, feel free

to email me directly jenniferdmeade@...

Also, my son's SLP at his school is a waste of time but the one we take him to

privately is good - it's like anything else some are good, some are not and very

few " get " the biomed stuff - there just isn't enough awareness out there. I had

to sit thru a seminar / lecture by co-workers about how SLPs should not help

kids on the spectrum w/ pragmatic difficulties in the school system since the

difficulties are not due to speech issues and that according to a 2002 study

secretin gets 90% of kids off of the spectrum so that is what parents should do.

People are crazy! :-)

Josie Lecraw <josie.nelson@...> wrote:

Hey the SLP!! More SLPs should be like you!! Another one just

yesterday discouraged a friend of mine from adding CLO for her daughter b/c

she wasn't " really " delayed by the books (but is articulating less well than

her twin). This child has other soft signs that everyone here would

recognize.

Anyway, to answer your question I would say:

1) The enzymes will likely help more than you had ever imagined

2) Have a plasma amino acid test run

3) Have an Essential fatty acid test run

4) Check the detox pathways (have an OAT test run) - not just B12

markers but glutathione levels and COQ10 and etc

I think many of these kids have fatty acid metabolism problems and adding

the fish oil can give short bursts but can actually ADD to oxidative stress

over the long haul if not balanced properly (I have a load of material on

this but not time to post right now). I think as Kathy E has said on

numerous occasions the diet (GFCF with or without enzymes) can help too. I

know we saw improvement when we tackled this bit. But the biggest piece

(though I think they were all critical together) around here was the custom

amino acid supplement Dr. Cave added after the plasma amino acid test. I

remember sitting down with the Metametrix Intepretive Guide and getting a

big " WOW " and beginning to understand just how MANY of them might impact my

daughter's gross motor and overall strength and articulation. Made me think

that EVERY child with apraxic tendencies should have the plasma amino acid

test run, have their fatty acid metabolism checked and do a trial of GFCF

(and/or enzymes - we can do gluten with enzymes but not dairy). My child

used to conk out at the playground and not be able to manage some of the

climbing things and ran more slowly than the others. This is just not true

any longer.

Take care,

Josie

Re: Apraxia--Haleh

Children with apraxia MUST have speech therapy. Apraxia is a motor

planning disorder -- usually associated with speech -- called

Developmental Apraxia of Speech (DAS) or Childhood Apraxia of Speech

(CAS).

There are several articles at the Apraxia-kids website that you can

access and take to an IEP regarding the necessity of 1:1 speech

therapy, and the length, and the frequency necessary for children

with apraxia to recover. Imagine not being able to walk and being

told that just being in a classroom full of kids who walk will help

your child learn to walk. It's ridiculous. The child with apraxia

needs frequent 1:1 ST in order to gain improvement. Practice,

practice, practice. And then they forget how to say it the next day.

And they practice, practice, practice.

a

--- In , haleh niazmand

_____