Torticollis (Tilted Neck)
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Torticollis (Tilted Neck)
March 2005
Hi,
My 16 month old daughter has torticollis. She was diagnosed
when she was 4 months old at which point I started physical
therapy as well as helmet therapy for her misshapen head. All
along everyone told me everything would resolve once she
started walking and that her head would even out. Well, a year
later she is still has a significant tilt and her head is still
misshapen. We were discharged from physical therapy several
months ago however continue to go for osteopathic therapy once
a week. I would love to speak with other parents who have
children with torticollis/misshapen head. My orthopedic surgeon
is talking about potentially operating (the operation is called
a release), I would love to know if anyone has had this type of
surgery and what the results were.
I am an osteopath in Orinda and have found osteopathy to be a
very helpful tool for treating torticollis, commonly in just a
few treatments. If you have questions and would like to talk
about it feel free to call.
I did not read the original post, but a friend just strongly
encouraged my to reply. I am intending to respond to the person
who is considering surgery for a child with a torticollis
diagnosis. Based on personal experience, which I've detailed
below, I urge you to confirm that the torticollis is not due to
ocular problems. Perhaps you've already done this, and perhaps
you have clear confirmation that the torticollis is due to a
muscle spasm or tightness. But in case you haven't, please know
that a head tilt is a diagnostic hallmark of fourth cranial
nerve palsy,a disorder in which the eye's movement is restricted
and the child tilts the head away from the affected eye in order
to prevent double vision or to preserve binocular vision.
For what it's worth (and partly to vent), here's my expeience.
My daughter was diagnosed with torticollis at 5 months and
endured several months of physical therapy stretching exercises
(which I felt were pretty traumatizing to her). This, all while
I was suspecting that she may have some vision problems,
although our pediatrician tried to allay those concerns. When
she was 12 months, I could no longer ignore the fact that she
continued the head tilt despite the p.t. noting that her
flexibility was fine. I also was becoming increasingly
concerned with her intermittent squinting and the comments from
friends and family that her eyes appeared someone crossed. I
took her to an opthamologist (Dr. William Good), who immediately
diagnosed her with 4th cranial nerve palsy, which is commonly
misdiagnosed as torticollis. We are now treating the problem
with patching and will likely be looking at surgery in a few
years. Had we checked out the vision problems sooner, we could
have avoided all of the physical therapy and begun the proper
treatment sooner, possibly avoiding the need for surgery.
I hope this helps.
Alisa
Jan 2004
Does anyone have experience with a baby with wry neck? Our 6
month-old has been tilting her head to the right for a few
months now. I asked the doctor about it and he said that this
was just a very mild case of wry neck and that he wouldn't have
even noticed it had I not called his attention to it. He said
it probably came after a cold that ''got into her neck.'' The
doctor recommended doing stretching exercises daily, which the
baby hates! What have others done to deal with this condition?
What about baby chiropracters? Is there any chance she'll just
grow out of it? How long should it take for the stretching
exercises to remediate the condition? Thanks!
anonymous
Wow, you are a great parent for noticing this and being
concerned. However, I worry that your pediatrician isn't taking
this seriously enough. First, are you absolutely sure that your
daughter does not still have an infection of the ear or sinus?
Some kinds of infections can throw off the ''balance center'' in
the inner ear and cause the head tilting that you are noticing.
She should definitely be examined to rule out any type of
infection first. If that turns up nothing, she may actually have
torticollis (although its strange that it would appear so late
after birth, usually it is caused by an injury) in which case
she should be referred to a pediatric Physical Therapist or
Occupational Therapist to intervene now before it gets worse.
Untreated torticollis is a serious condition and can lead to
facial deformities and uneven eyes and features besides the odd
neck tilting which becomes a permanent deformity in itself. The
key to treating it is not only to do the right kind of
stretching, but also more importantly the right positioning in
car seats, bed, swings, etc. A pediatric PT or OT can show you
games to play to work with your daughter to make the stretching
easier. Trust your parent instincts and get a second opinion
from another pediatrician.
a PT and a mom
A first alternative to seeing a baby chiropractor is to see a
specialist in craniosacral therapy. Susan Feldman, at Back in
Action Chiropractic at 2500 MLK Way in Berkeley, is an expert
craniosacral therapist and often sees babies. I had her check
my 6 week old son for anything to watch out for in terms of
stiffness or soreness, especially since my older niece could
only breastfeed from one side because she refused to move her
neck to one side (my son checked out with no issues and enjoyed
the whole thing). I've had it done myself for neck pain and
headaches and found it extremely beneficial yet extremely
gentle. I believe Ms. Feldman may even be advising/consulting
or doing something or other with Children's Hospital of Oakland
(but my memory is not so good now that I'm a mom, so I'm not
s! ure how accurate I am on the latter). Again, it's so gentle
that, as long as an expert who has experience with babies
checks her out, there should be no problem with simply having
your infant looked at.
CST enthusiast
We needed body work for our daughter when she was born, and were
thrilled to find Nancy burke in Richmond. Nancy Burke
Bodyworker and Craniosacral Massage
Work: 236.1007
237 25th Street
Richmond, CA 94804
MacDonald Exit
Left on 25th
She uses very gentle massage technique called CranioSacral
therapy. It didn't look like much to me until I made an
appontment for myself (becasuse my vertabrae kept rotating after
my daugheter's birth, and I didn't get any help from weekly
chiropractor appts. Finally after 7 months I saw Nancy and it
only took two treatments. Never had another problem) Anyway,
she works with a lot of babies and is a natural with them. You
might look up craniosacral massage for more information about
it; I would basically say it is a gentle technique for releasing
tension in the connnective tissue, with the idea that by
releasing those tissues then the muscles can relax. Our baby
was twisted up and as a result had a very stiff neck and
couldn't open her mouth wide enough to nurse properly. She was
helped in just a few treatments, the nursing worked itself out,
and she's still happily nursing! at 18 mos. CranioSacral sounds
much more gentle to me thase xercises that you and your baby
hate! I urge you to call Nancy and at least chat with her about
the issue; if she cant help you, she knows a lot of other people
that do bodywork with infants. Good luck!
March 2002
My daughter, now 10 months old, has mild torticollis or a tilted neck, probably from how she was positioned in
utero. I discovered it at about 6 weeks, although it took the doctor a few more months to take it seriously. I've
taken her to an osteopathic doctor and physical therapist, and although she's much better, I'm not sure how
much they helped or if it was just her growing and getting stronger. I'm worried about long-term effects because
I myself have chonic pain from scoliosis and an assymetrical body. I want to try other body work treatments for
her to address her asymetry at this point, before she might deal with the effects it has on her developing body as
she learns to walk, etc. Any one have experience with this or can recommend a really good infant body
worker? Thanks.
6 month old with torticollis
Has anyone had experience with torticollis? Our six month old daughter has been officially diagnosed and
should have been referred to physical therapy earlier. Nevertheless, she will have stretching exercises and be
fitted for a cervical collar soon. We are, of course, worried and would love to hear from anyone whose child
had torticollis as an infant. Any advice, success stories, things to watch out for, alternative therapies, comments
to anticipate from others, other recommendations, etc.? It is pretty uncommon, but the folks at Childrens
Hospital Physical Therapy seem to know how to treat it, hopefully successfully in our case. We are curious at
what point your child was referred on by the pediatrician. It seems they are not as on top of it as they need to
be. Thank you in advance.
a concerned mother
Hi
My son had a tilted neck, presumably from positioning in utero. It wasn't diagnosed by our pediatrician, but I
noticed him looking only to one side, and pretty much ignoring the other side of his body. I talked with my
excellent physical therapist about it, and she said we weren't doing him any favors by ignoring it...and sent me to
another excellent osteopath who works with babies. Her name is Catherine Henderson, and her office is on
Solano. She was trained as an osteopath in Britian, where the practice is much gentler, and sees a lot of babies
and kids. She is not licensed as an osteopath in the US, so insurance doesn't pay. Anyway, she saw Alex for 2,
maybe 3 sessions...and the problem was gone! I highly recommend her, and my husband and I are not generally
into alternative medicine, especially for kids. But she showed me what she did, and I could hardly feel it. Alex
did cry, which she attributed to emotional release. But I could see the progress easily, so it was definately
working. The PT who referred her, by the way, is Edie Murphy of Lakeview Functional Rehab in Oakland,
who also has a good reputation in the East Bay. She works with disabled kids and has a disabled kid herself. If
I had been to children's and had a brace, I would still have gone ahead with Catherine, and hopefully shortened
the treatment time. Good luck. If you have any more questions about this, feel free to write.
patl
I was a chiropractic assistant for several years, and have also been a patient for a long while. I have seen many
people, both children and adults with torticollis helped. I have an awesome chiropractor who is dedicated to
helping people. She has reasonable rates, and a family plan ($200 a month for a family of 3, and you can come
as often as you need to). She's well trained with babies, and my daughter just adores her. Now- don't everyone
expect this, but my husband was laid off after we'd been patients for a year. We had a hard time meeting our
finanical obligations, and she treated us free, for 7 months! She's dedicated to helping people get well.... Her
name is Geraldine Mulhall, and she's in the city- but I know she does some work ing the east bay on Wed. her
number (415) 831-8719
Rachel
Hi,
I do not know of a infant bodyworker but I do know of a great gentle, noninvasive technique. Orthobionomy.
There are a few on Solano Ave. I have not tried them personally but I studied the technique myself and it is
fantastic. I had to stop when the new ''massage therapist/healer'' career I was trying caused a final flare of
fibromyalgia that never went away. I do have a friend who got sesions from me and then went to a woman on
Solano due to the results from our sessions when I was learning and she loved her.
mscwalker
My daughter had torticollis. I noticed it at about 3 months -- because in all the pictures I took, her head was
always flopped to the right. I mentioned it to our pediatrian, who sent me immediately to a physical therapist.
The physical therapist told me to say a special thank you to my doctor the next time I saw her. The PT said that
many doctors will not send a child with torticollis to PT. Rather, they have a habit of waiting to see if in a few
months the natural strengthening of the neck will take care of it. The PT said that in some cases that's okay, but
in others, if the child hasn't had any PT until she begins to walk, then it's alot harder to correct, painful for the
child, and sometimes requires surgery. (Our pediatrician was 3 years out of medical school and I attribute her
willingness to treat my daughter immediately to the fact that she wasn't ''old school''.) We went to PT once a
week for about 3 months, then tapered off to about once a month. By the time she was 10 months, she was
''cured'' (although I still look at her regularly to make sure there's no re-lapse, she's 26 months old now). It did
not affect her crawling or walking. The PT session itself was 45 minutes of tilting her body in ways to make her
head go the opposite direction of the torticollis. The PT made me learn how to do the exercises, and made sure
that I did them between PT visits at least twice each day. The difficult thing was that she was diagnosed with
right torticollis but after a couple weeks of PT she started to slip into a left torticollis - the treatment then shifted
to strengthening both sides of her neck equally. The exercises themselves were not complicated - just shifting
her body in certain ways so she was forced to use her neck muscles in different ways. The PTs know all kinds
of tricks to make it interesting for the kids too. I'm afraid I can't give any advice about where to go in the East
Bay, because we lived in Washington, DC when this happened. Our PT was at Children's Hospital in DC, and
so I'm sure that the Children's Hospital here is equally wonderful.
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