Re: Is there a link between Constipation and Apraxia?

August 6, 2006

Sorry you misunderstood -my child is 10 years old now and I was

referring to myself. 'I' don't go by memory alone at this point -

and anyone out there can research just about anything I say from

recent till back when this group started in 1999 -I do.

I notice that some people do forget stuff once their child is doing

well. I guess because they are on to normal stuff -this group

provides the ability to know the past -kind of like we each are

writing our own history book -those that post anyway. The only

reason I know people forget stuff is because I try to find messages

to create a " memory road " for those who want to celebrate when their

child is doing well. When you post their first message and a few in-

between up till recent it shows how far the child has come -how

they've come through fear, anger, frustration...to a child that has

a voice! Success. But many times in addition to learning how far

they have come, parents will comment on how they forgot things they

had posted before. In my observation I do notice most at some point

who have children that surged on EFAs forget to mention them for

some reason -guess they don't seem that important when all is 'said

and done' literally and figuratively speaking.

And...back to our current topic - in memory and in archives -my son

didn't become constipated until we started to try to potty train

him. He didn't potty train until around 4 years old but like most

we started trying to train him at 2.

(but again that's my son Tanner -I can't speak for your child)

Just one other thought. Based on your theory, your child is very

fortunate that your SLP experience has been good. Some of us as

you'll find in the archives had to go through a few before finding a

gem. You had a great experience with a naturopath -but not all do.

http://www.quackwatch.org/01QuackeryRelatedTopics/Naturopathy/naturop

athy.html

Granted I know some of you don't care for this MD's views -but

everyone's got an opinion.

And if in fact your child (God forbid) had any physical reason for

the constipation I personally don't know if your naturopath would

know to refer you to a medical doctor..like a pediatric

gastroenterologist ...perhaps s/he would.

But again in checking the archives we have children in this group

dealing with serious issues of the gut that need more than EFAs and

ridding the body of toxins...one of them is 's son ...and

thank goodness for her son that she didn't give up on MDs -because

if she did her son wouldn't be here.

And sadly there are those law suits out there on the net -one

doesn't have to search much -here's just a two.

http://www.seattleweekly.com/news/0523/050608_news_naturopath.php

http://www.courttv.com/trials/oconnell/012606_ctv.html

But to bring it back home here...yes was probably affected by

toxins...but needed more than just to rid his body of toxins -

the child flat lined in his gut. I for one am thankful that

sought out the best medical care to help this sweet little boy that

Tanner at one point went to preschool with. I know you are

still out there...and we are all still here for you!

Here's a clip from an archive:

I can easily find the other links about the " toxic ooze " if anyone

in NJ is interested. The only reason anyone even noticed the black

ooze was because birds started dropping dead in it and some

environmentalists noticed. (they notice the birds...what about the

children?)

Scientists from Rutgers and UMDNJ have looked into it and one quote

was that the children around that area should be studied. I know

one of the children who lived right next to that park from this

group. R.'s son who's story is in The Late Talker

book. Her son not only is apraxic with hypotonia and sensory

integration dysfunction -but like many went through constipation.

Since back then parents of apraxic children on one particular

apraxia grouplist were not allowed to bring up " off topic " posts,

none of us knew that 's constipation was probably also due to

whatever caused the apraxia. (just as an aside of this: or what the

listowner personally viewed as [OFF TOPIC] which is the way it

is/was written in by the moderators of that group when you posted

something about EFAs or whatever. Or they won't post it at all)

Danger of this? developed the most severe issue of

constipation

I've ever heard of. After years of harsh medications- he flatlined

in the gut. Poor little guy has not a cecostomy - a hole

in his stomach that has to pour water into to help him move

his bowels. I always write this with tears in my eyes for poor

.

Perhaps if we knew then what we know today things would be different.

message from

/message/26771

Message from me about

/message/26398

So when some of you wonder why I'm so passionate about sticking

around to help new parents and make sure they get the right

info...it's because of my son, and the many like them...and

the rampant misinformation out there that still exists in our

society -not just one profession. Ruling out an entire profession

due to one or two bad experiences is your choice...but not a good

one in my opinion...just my opinion however -and we all have that

right to have one.

=====

August 6, 2006

Miche, your child presents more as what some call a pure verbal

apraxia which appears to be rare. Don't get me wrong -many believe

that it's just a speech impairment, and wish that's all it is, but

for most with apraxic children as time goes on the other soft signs

become apparent. You are fortunate it's just verbal apraxia. Also

on the rare side is that your child doesn't respond to EFAs. I'm

not sure of the percentage of children with apraxia that go through

constipation -but it appears to be more common then the norm.

In the classic text book definition of apraxia in pediatrics which

wasn't even accepted by all speech professionals no less medical

when Tanner was first diagnosed just 7 years ago in 1999...the soft

signs like hypotonia and sensory issues were not mentioned, no less

constipation! Then again back then EFAs if you can imagine was [OFF

TOPIC] Perhaps the confusion is that both aspects of apraxia are

correct -the old view which is rare and the what we are seeing today

in this rising group. Where are these children coming from as their

numbers grow since it appears not to be genetic since in most cases

there is no predisposition towards a communication impairment?

As always I suspect whatever is causing the multifaceted aspect of

communication impairments we are seeing today is environmentally

triggered, and those appear to be in the majority the children that

respond to EFAs. Don't you live in New Mexico? Even though PROMPT

is there if that's where you live...far from a cluster area -so

probably the environmental trigger is low or not there. It's a good

thing that PROMPT is looking to open some sort of school in NY -an

close to cluster areas of apraxic children.

But back to constipation -not that constipation can't just affect

any child...but talking about this group and as often as it comes

up -again appears to be a connection.

But based on all of the above -perhaps your child is one of the text

book cases of apraxia -and that's why no constipation for your

child? What do you think?

(for those that don't know you -clip of archive)

>Actually PROMPT is not a cult or anything and it's not a

>miracle therapy either. It is however a very solid and proven

>technique of therapy that appears beneficial for many children with

>motor planning disorders of speech. It's a type of " touch cue "

>therapy.

I understood the concepts behind it and was shocked to hear that from the

person I spoke with (who looking at their website wasn't a therapist which

makes me feel better.) She spoke in such a way that I don't think she was

purposely misrepresenting herself, but I really thought she was a therapist.

>I do understand your feelings about PROMPT in New Mexico however.

>As huge as they may be in the eyes of those outside of NM -there is

>from what I hear very little support and outreach in their home

>state for some reason. has tried to contact them numerous

>times to see if they could do a conference or outreach for those in

>their surrounding area. Just off the top I have a suggestion for

>them too! For example wouldn't it be great if they could in-service

>the SLPs that work for the school system for New Mexico? I mean -

>how long would it take to train 3 SLPS?! (just kidding -don't know

>if there are only 3 SLPs for the entire state of New Mexico -there

>may only be 2)

Exactly! It would be funny if it weren't so sad. But it really is the

school system's fault. I know you have no respect for my son's former SLP,

but she was extremely upset by the way she was treated in the schools. Did

you know the public schools in NM " passively " recruit. See this way they

meet the legal requirements to search for therapists, but since no one

applies they don't actually hire anyone and don't have to pay for

anyone! When I questioned the legality of what they were saying, the IEP

specialist present (they pulled her in the room to shoot me down because I

was arguing and being forceful) said that there is " THE LAW " and then there

is reality, and if they can't fill the spaces they aren't obligated to

offer the services. Huh? The big problem is without being able to clearly

go in and say my child has THIS and needs THIS I can't argue adequately

that they pay for services outside of the school system. Plus there has to

be an actual therapist he can go to outside of the school system! If it's

just my opinion what pull do I have?

>It's true after all you've been through that you don't want to jump

>from the frying pan to the fire with your child -but honestly if

>there is anyway to get your child to the PROMPT institute for help,

>I'd get him there. They may be the closest thing you have in your

>area for sanity in regards to how to help your son if he is

>apraxic. Not that they are the only therapy I recommend for

>apraxia -but PROMPT or touch cue is one that again has been found

>successful. If it's true that they have not reached out to those

>like you in New Mexico to help the outrageously horrid situations in

>their home state as they travel around the world that's just sad.

>But let's give them the benefit of the doubt. Perhaps even though

>they are in New Mexico the PROMPT institute is completely unaware of

>the lack of support and appropriate therapies and even therapists in

>New Mexico to help children with apraxia.

The warnings I got were that while PROMPT is supposed to be just a touch

/cue/ system children were being forcefully held in place and forcefully

handled to the point of it being uncomfortable to their parents to see and

also driving some kids to the point of deep frustration. I was talking

with the one therapist who sees my child the best and she reluctantly

confirmed that she had heard the same experience. Perhaps it was just a

couple extremely vocal parents who really networked their disappointment

with the program? A year ago when being forced to do something he didn't

like my son would first lash out a refusal and then withdraw a little. If

he was being forced he would NEVER cooperate! He needs to be very relaxed

and comfortable. His current EI and he work well together. She knows

where his line is and is careful to approach but never cross it. I'm never

sure how far to go with more therapies and evals. After the initial ECEP

eval started to have some discipline issues and he just wasn't happy

anymore. I'm sure a lot is because I dove into researching autism and did

less with my child and I was moody and crying and there was always

discussion around. He screamed when we got to the parking lot of the

building for the second meeting with someone from the team about a month

later. He was ok after that meeting went fine, but he wasn't cooperative

on his next medical check-up. So it's always in the back of my mind that

more evals will set him back if they aren't done with respect for who he is!

>And hey -when that person told you to " stop all other therapies "

>that's not hard to do right now since your SLP for the state

>left. Right?

>(I'd still say good riddance! Get yourself a Kaufman Kit and you'd

>probably be a better therapist at home!)

Ok, what is a Kaufman Kit? At his last IEP I felt like screaming at them

to just send ME away to training for a while. I feel very confident

helping my child and teaching at home. I have a BS in biochemistry and I

have taught lab classes in college and grad school and worked with gifted

children through the s Hopkins CTY program on top of having been a

tutor since I was 14. I would wager my IQ is higher than anyone else who

was in that room! Not that IQ has ANYTHING to do with how you can work

with your own child, but it was pretty pathetic the way I was talked down

to! It was a foreign concept to everyone there that I actually work with

my child at home and expose him to all kind of things (dance classes,

soccer team - and he does GREAT in those - he is more attentive and

enthusiastic than his peers actually!) I think the problem in this town is

two fold. Wages are low and cost of living is high so it is hard to

recruit competent staff. Then there is a HUGE economic and education

gap. There are those who have and those who have not and not much

in-between. Those that have do everything privately. Many of the people

here who need the schools for special needs kids just nod and smile and

accept what they get not knowing they can fight it.

>Again I will give you 's home and cell number as soon as she

>comes back -will let you know. In addition to a bit more in The

>Late Talker -here are some pages about Khalid

>http://www.cherab.org/information/familiesrelate/success.html

>http://www.cherab.org/news/insideedition.html

>http://www.cherab.org/information/phototrip2000.html

>

>And here's the most recent email from the one who has always been my

>inspiration for my son Tanner. Khalid Mustafa!

~~~~~~~~~~~~~end of archive

Hey...did you ever get the Kaufman Kit?

=====

August 7, 2006