Re: Torticollis Connection to Apraxia?

[Guest guest]

Although through the years many have asked about a variety of links -

there has of yet been no known obvious connection to anything in

regards to apraxia except for two things. There may be subtle

delays in myelinazation for some reason which would explain why the

EFAs work for so many of the children here since they have such

strong remyelinating properties. If you search the archives here

I posted my theory as to why (environmental toxins that cross the

placenta) and a few days later was called into UMDNJ to do a

presentation of my theory to the neuroMDs there. I had posted that

perhaps we don't have the technology yet with MRIs to pick up subtle

delays. Since then, I've heard through the grapevine that pediatric neurologist

Dr. Xue Ming has found that even though the subtle delays didn't

always show up in MRIs (at times they do) they were showing up in

the patient caseload with autism and apraxia in the lab (in cheek

cell scrapings)

The only other thing is that quite a few in the group said that

while still an infant their apraxic child had unusually high fevers

of 103 or higher both with and without seizures. I was also told by

a PhD that around 11 months a baby no longer has the immunity

protection from the mother, and doesn't yet have his/her immunity

built up all the way yet. That would also bring to theory that

perhaps apraxia is due to illness which would also explain why there

appears to be cluster areas of infected children? (which of course

would eliminate all insurance problems!)

Spastic torticollis is another I'm familier with -but not in my

apraxic child. In my oldest non apraxic son Dakota. We just

yesterday went to Disney and today due to intensive daily therapy

from 2 or 3 weeks old -he appears just like everyone else. No

indication of the former torticollis -except a slightly more obvious

vein in the one side of his neck. No problems with sports, rides

anything. In fact in regards to rides -there isn't any we all don't go

on and love!

Dakota's page

http://www.cherab.org/information/familiesrelate/workandfamily.html

Here are some archives on this subject the last time it came up in

2003

~~~~~~~~~~~~~~~~~~~~start of archive

From: " kiddietalk " <kiddietalk@...>

Date: Tue Nov 25, 2003 10:15 pm

Subject: Re: torticollis presentation

I agree -Kathy you sound so amazing!

Dakota's torticollis was diagnosed by various pediatric neurologists

as " spastic torticollis " (torn neck muscles).

http://www.pediatric-orthopedics.com/Treatments/Scoliosis/Torticollis/torticolli\

s.html#SpasticTorticollis

Dakota's presented to look and feel like a broken bone in his neck

(which was the torn neck muscle -not a bone) His must have been

more severe because strangers used to look at him and wipe tears

from their eyes. Not the kind of thing any mom wants as you may

know. Again however -Dakota's injuries were more severe and all due

to birth trauma/delivery.

http://www.cherab.org/information/familiesrelate/workandfamily.html

Not one MD or therapist at all suggested that it would go away on

it's own. In fact his therapy had to be overseen by the pediatric

neurologist. Without therapy we were told his facial features would

be deformed from his face pushing into things. So I'm not sure if

there is torticollis that is so mild that people aren't sure what it

is vs. more severe where it's treated by neurologists? Dakota's

neurologists not only would not allow just anyone to do therapy

either. I don't want to get into it -but we had one bad experience

with a therapist who didn't know how to work with infants -he tried

to just push Dakota's head back. Dakota after about a minute turned

bright red, his eyes bulged out and he screamed like someone was

trying to kill him. In addition to Dakota, his neurologist Dr. De

Souza freaked out as well. This is when he wrote a letter that

Dakota's therapists needed to be pediatric therapist and

knowledgeable about his various head and neck injuries or they could

do " irreversible damage "

Some of his therapy for the torticollis:

He was laid on a therapy ball and toys and bright/musical objects

were held in ways that would try to get Dakota to lift his head in

the way they wanted.

I needed to put him on his belly for a bit -but for the most part he

could not lift himself up at all.

All toys 'always " needed to be on the side that forced him to try to

turn his head -we had to very gently push his head. (I would do

these exercised with him and turn my head to cry so he wouldn't see

me -I only wanted him to see me smiling) We always needed to use

rolled up blankets to gently prop up his head and force it to push

the other way in his car seat, stroller, swing, bouncy seat etc.

We had to sit Dakota in a way that forced him to turn his head all

the time to eat, watch Barney (he LOVED Barney) Dakota now has a

noticeable vein in his neck -which in certain positions sticks out

more. Probably however I'm the only one that notices it (because

nobody did unless I pointed it out -which I no longer do)

=====

[Guest guest]

Make an appointment with pediatric neurologist, Marilyn Agin in NYC.

> Hi,

> My almost-three-year-old son has recently been evaluated and

> determined to have an expressive speech delay. His SLP is currently

> working with him to see if it's apraxia or just a garden-variety

> delay. My question is this: has anybody heard of a connection

> between apraxia and oral-motor delays and torticollis and/or

> plagiocephaly? When he was born, he had torticollis -- a tight neck

> muscle on his right side. We did PT for months to stretch it out,

> but in the meantime the condition led to plagiocephaly -- basically,

> a misshapen head from always leaning the same way. (It looked oval

> from above.) He wore a helmet to correct the head -- really for

> cosmetic purposes. Now he has a beautiful, round head and no

> noticeable neck issues.

>

> The reason I am curious is that in addition to this being quite a

> coincidence, an adult friend of mine told me that she has always

> suffered from spastic torticollis, and recently it has been making

> her tongue slightly numb!

>

> Have any of you heard of a connection? Have any of your kids had

> either of these problems, or worn a helmet for other reasons?

>

> Any advice on determining whether it is really apraxia? He doesn't

> have any other problems that are obvious to me, although he can't

> really pucker...

>

> Thanks for any advice you can share.