Re: i have a question maybe someone could help me

[Guest guest]

could be an ear problem. have you had the ears checked for fluid or

infection?

lori

[Guest guest]

Head tilt may not have anything to do with speech.

Has his hearing been tested? What does his doctor say?

Is he 'able' to put his head straight ever? Have you or anyone

checked for the possibility of torticollis? You would want to take

your child to a pediatric neurologist or neurodevelopmental

pediatrician for diagnosis, and so you could start appropriate

therapy. My oldest son Dakota had torticollis due to torn neck muscles

from birth trauma and the only way you would even know today is one

vein in his neck that only I notice. (over-observant mom -that's

me!)

Back when he was an infant surrounded by MDs it came in handy.

I was the one that found the " bone " sticking out of his neck

(it wasn't a bone -it was the torn neck muscles)

Below are some archived messages about torticollis:

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

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

Date: Sun May 15, 2005 9:50 am

Subject: Re: Torticollis Connection to Apraxia? kiddietalk

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]

hi amy,

Jeanne here. In an answer to your question. Maybe he imitating something

that he has seen regarding his head going on his side, does any program he

migh see on tv do that?. Also you might want to have his hearing checked in

case the inner ear has pressure in it. Also maybe have a check up with a

developmental pediatrician. I can give you some names. I run a support group

in Northern NJ bergen county. The next meeting we will have in on wed at

7pm at Temple sholom, 385 Howland ave, River Edge. NJ. I also have many

articles on apraxia at the meetings.

>

> my 21 month old son does not talk at all we have tried everything i

> was just wondering if anybody else child is always leaning their head

> to the side he is always doing that thanks for all the help

[Guest guest]

I dont want to scare you, but when my apraxic/epileptic son has complex

partial seizures, he leans his head to his shoulder, please get an EEG !!!!

Michele

>

> my 21 month old son does not talk at all we have tried everything i

> was just wondering if anybody else child is always leaning their head

> to the side he is always doing that thanks for all the help

>

[Guest guest]

Hi Amy,

I have a girlfriend who's little boy did that also and he ended up

having something wrong with his vision. I would also have his vision

tested by a pediatric eye doctor. They can do several tests on your

child without having to have them respond verbally. (as I just found

out with my 4 year old daughter that cannot respond to the eye

doctor about whether or not she can see somthing or which way

the " E " is facing!)

Just thought I would put my 2 cents in. Good luck!

Joni

> >

> > my 21 month old son does not talk at all we have tried

everything i

> > was just wondering if anybody else child is always leaning their

head

> > to the side he is always doing that thanks for all the help

>