Re: Torticollis: head tilt has changed direction - why??

[Guest guest]

Actually I've not found much on web sites as I guess it's so rare. There is a

lot of good information though in the 'groups'. The Torticollis group was

some help, but of huge help was the Face book: Benign Paroxysmal Torticollis

Group. They have links off to reference materials and numerous sites. They

would be a good starting point. Hope this helps.

> >>

> >> I experienced the head tilt switching sides.

> >>

> >> This is a copy of my post back in Nov:

> >>

> >> " My daughter has recently been diagnosed with torticollis and when I

> >> first

> >> took her in she had left tort, within a few days of doing the stretching

> >> it was center and then went right tort...the doc and PT looked at me

> >> like

> >> I was crazy and gave me exercises for the other side and now she's back

> >> to

> >> left tort...and more extreme than she was originally.  I am now taking

> >> daily pictures and will be meeting with a PT that does CST.

> >> Any input would be great!

> >> "

> >>

> >> Interestingly, no one could offer any answers...not here in this group,

> >> pediatricians, PT or even CST...some peds even suggested that I just got

> >> mixed up as to which side it was!  I was even told that torticollis

> >> CAN " T

> >> change sides but the doctor didn't offer any other diagnosis.  To this

> >> day

> >> I still haven't received any new information, but I thought I'd share

> >> what

> >> we've experienced.

> >>

> >> Basically, our PT who does the CST said she would treat what ever she

> >> saw

> >> at each visit and I should do the same at home.  She was the first to

> >> believe me about the side change  and it was finally documented, but

> >> again

> >> nothing different was diagnosed.  This is what I posted after a couple

> >> of

> >> visits to the CST:

> >>

> >> " We started CST about 3 weeks ago for our daughter who has torticollis

> >> and

> >> the kind of head-flattening where her head is narrow behind her

> >> ears...she

> >> has/had asymmetry with her ears, eyes(one smaller), and cheek as well as

> >> with her tort her whole body curved in a " C " shape.  Even with the PT

> >> she

> >> was up and down...some days better than others.

> >>

> >> While my daughter was having her 1st CST session I watched her eye open

> >> up, so that by the end of the session her eyes were almost symmetrical!

> >> Also her tort was so much better that she was able to fully turn her

> >> head

> >> to each side...I started crying...she was 3 1/2 months old and hadn't

> >> been

> >> able to do that, yet!  Her nursing was better, she slept better and her

> >> digestion was better!  Oh yea, my husband (who was skeptical)noticed

> >> when

> >> I got home that her head was widening in her narrow spots.  All this

> >> after

> >> one treatment!  She goes today for her third treatment and might not

> >> need

> >> anymore!  She is a different child all together! Even family and

> >> friends

> >> have noticed.  I can't say enough about this treatment.  You can check

> >> out

> >> this website to find a therapist:  www.upledger.com "

> >>

> >> After this post my daughter has continued to improve and I haven't seen

> >> any head tilt since December!  I also feel her head shape is improved

> >> and

> >> within normal.  Although, her one eye is sometimes smaller and her one

> >> cheek is sometimes fuller, but not usually even noticeable unless I

> >> point

> >> it out.  She sleeps much better and her general attitude is brighter.

> >>  She

> >> is 7 1/2 months old and has been able to rock back and forth on her

> >> hands

> >> and knees since about 5 1/2 months, but not crawling and has always

> >> loved

> >> being on her tummy.  She's working towards sitting on her own but

> >> frequently kicks her leg out to the side and falls over...the leg goes

> >> out

> >> on the side of her head tilt(the original and final side).  The one

> >> thing

> >> I feel is still a concern for her is her bowel movements.  She is my

> >> seventh child and I have breast fed all of them.  All of my children,

> >> as

> >> infants, pooped multiple times a day.  This daughter has been different

> >> from the start; she regularly pooped once every 4-5 days!  I have read

> >> and

> >> been told that this is unrelated to the tort and is actually within the

> >> range of normal for a baby her age, but I've raised six babies before

> >> her

> >> and never experienced it.  The other thing she was diagnosed with was

> >> acid

> >> reflux...again six babies and never had that either.  While I believe

> >> the

> >> acid reflux is gone, she does not poop daily; usually every 2-3 days.

> >> Because of this I have chosen to start solids more slowly than I did

> >> with

> >> my other kids and she seems to be doing fine (no new symtoms, but no

> >> improved BM frequency/consistency).  I continue the CST at home, for

> >> her

> >> digestion, and am hoping that this will improve with age.

> >>

> >> I know that all this info about the digestion wasn't what you were

> >> asking

> >> about but I'm curious if you've experience any of the same?  I did look

> >> up

> >> the BPT and my daughter didn't have anything like the " seizure " episodes

> >> described, but I could relate to the " banana shape " one parent called

> >> her

> >> child's tilt.  My daughter's whole body was curved and she had a hard

> >> time

> >> latching on to nurse because of this shape which I feel was related to

> >> her

> >> acid reflux.

> >>

> >> I hope this helps!

> >> ~, Mom to seven

> >>

> >>

> >>

> >> Does anyone have experience, or detailed knowledge on the head tilt

> >> changing direction?

> >>

> >> Background:

> >>

> >> My 9 month old, has moderate torticollis (with mild plagiocephaly).

> >>  She

> >> has been treated with physical therapy since 3 months.  Periodically,

> >> the

> >> left tilt would correct itself but then relapse regularly (every couple

> >> of

> >> weeks - and marked).

> >>

> >> However, 2 months ago, her tilt switched sides, from the left to the

> >> right.  It then improved to upright; relapsed to the original left side

> >> (I

> >> think after a growth spurt); went upright again (even during a 4 day

> >> period when she has a very high temperature due to a cold); then

> >> relapsed

> >> again to the 'new' right side a day after her temperature dropped.  It

> >> has

> >> now settled on the 'new' right side.

> >>

> >> I'm perplexed as to how to treat her now.  Also why:

> >> 1) it has switched sides - and currently seems to have settled on this

> >> new

> >> side

> >> 2) why her relapses are so pronounced and relentless (I think more than

> >> is

> >> normal)

> >> 3) why her head was upright during a time she was clearly very sick.

> >> Normally I'd have expected it to cause a head tilt!

> >>

> >> I've looked up 'Benign Paroxysmal Torticollis' which describes the tilt

> >> switching sides, but none of the other symptoms match her.  Also, from

> >> birth she always rested her head in one direction when sleeping (despite

> >> repositioning,) so I believed it was this (and possibly a forceps birth)

> >> that had caused classic Torticollis.

> >>

> >> Your experiences would be welcome.

> >>

> >> (BTW - for those interested, her plagiocephaly was fortunately mild -

> >> hence we did not go down the helmet route.  It was successfully

> >> prevented/treated using: a) goi goi pillow which they use in Sweden up

> >> until babies start rolling following that, she had a memory foam cot

> >> mattress c) lots of tummy time and d) a cranial osteopath gently shaping

> >> her head which was very effective.)

> >>

> >>

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> >>

> >> ------------------------------------

> >>

> >> For more plagio info