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

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Thanks for your post. I'm delighted you baby has stopped the head tilt. That's

wonderful.

My poppet has a few things in common:

- the 'C' shape of her body, like an extension of the tilted head (this has now

got much better)

- the tilt switching sides is perplexing everyone, as she has no other symptoms

of BPT (and no-one has heard of it as its very rare)

- the gentle head manipulation by the specialist worked wonders.

We have had to have a fair few sessions with the cranial osteopath, but she

seems to enjoy it and likes the guy. Each session showed real improvement: the

eyes evened out in size, and her cheeks balanced up (one was VERY full). Now her

face is symmetrical and the ears are almost in line. There is a little more to

do but we are getting there.

I've also joined a Torticollis group who have advised me to see a

neurologist, as it seems you do not need to have any other symptoms for BPT.

So, if you are concerned, or your child has a relapse, you might want to look

into this. There is also a BPT Group on Facebook which has been very helpful.

Good luck for the future.

>

> 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