PT Seeks Input Helping a Child with Torticollis


Jill Posts:

DEAR ERI COMMUNITY:

Hello, I am working with a child with Goldenhar Syndrome and significant right torticollis. I have been working with him for almost a year, and we have had phases of the neck alignment improving, but seems to have plateaued more recently. He is now 16 months old, and quite resistant to any stretching, and most handling. His family is great and tries to incorporate what they can into the daily routine, but of course his tolerance for this is poor, as he’d prefer to be up walking. His passive range of motion is pretty good, with his primary limitation being rotation. But he consistently maintains a 45 degree head tilt during play. He has a TOT collar which helps quite a bit, but limits his rotation, and encourages him to rotate to the left. In addition, once it’s removed, his tilt becomes even worse. We have tried kinesiotaping, but his skin is very sensitive and he did not tolerate it.

I would love any suggestions/treatment ideas people may have for working with a child of this age with torticollis. In the past, I have been able to discharge most of my kids with torticollis around a year. I feel like we have tried everything with this little guy, but we just aren’t having a lot of success.

Thank you!!!

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34 Responses to PT Seeks Input Helping a Child with Torticollis

  1. Debby Mooney says:

    What do you think about referring him to a physiatrist to discuss botox treatments to weaken the muscle so you can get a better stretch. In my experience, if the child is resisting me during stretching, he can actually make the “offending” SCM stronger. Just a thought.

  2. Jill Gillette says:

    Hi, with unresolved torticollis, has the doctor considered an MRI? With the significance of tilt following the PT he has received, I would want to know if there is something more going on. The other thing to consider is his visual field. It sounds like you have got him where you want him, at least mostly, passively, so I would start “looking outside the box” and trying to consider things it could be other than torticollis causing the tilt.

  3. Joanne Bundonis says:

    Is there a chance seeing a physiatrist for Botox may help?

  4. Megan Frazier says:

    I have a child the same age with persistent torticollis and I have been attributing it to her strabismus -(although the pedi ophthalmologist said her “Eyes work just fine” and evidently didn’t notice the lazy eye that I see). It sounds like strabismus is often present in Goldenhar syndrome? (I have never seen that syndrome before!) I would be sure your patient’s vision is assessed and treated if necessary. If there is an un-addressable visual deficit, working with a lot of vestibular input may help the child “learn” where his head is in space in the absence of visual information. Good luck!

  5. Jacqueline sax PT says:

    Have you tried working on the exercise ball, or possibly working in a pool.

  6. Camille Haye says:

    My first inclination reading the post was has there been any Diagnostic tests done to rule out bony anomalies such as hemivertebra etc. Is it matter of rotation limitation because of tightness or contralateral weakness which is a red flag to me to screen cervical and maybe even thoracic spine for signs of asymmetries which may lead to more need for workup via MRI etc. Has his vision been checked? Could there be a vestibular component as well?

  7. Barbara Perin says:

    You mentioned a head tilt during play. Has the child’s vision been checked?

  8. Bethany says:

    He may be a surgical candidate at this point.

  9. marsha whalen says:

    Has anyone checked the child’s vision? He may be trying to align his head so things “look correct” to him. Also try activities in standing since that is where he wants to be. If you have a fridge let him play with magnets that are large enough he won’t swallow while standing on a balance board. Tip the board opposite the way he needs to side bend to encourage active righting, place the magnets to the side you want him to rotate to.

  10. Brandy Helchen says:

    A couple of things that may help: 1. Does he over compensate with the opposite cervical paraspinals / upper trapezius? If so, he also may be using them on a very limited basis on the side that he tilts towards. Many of the older babies I work with have this problem and strengthening using a prone carry / “Superman” position tilting his body just a little to engage the weak muscle has been a big help. Watch carefully, though, as so often my young friends have such poor endurance in the same side cervical paraspinals that they turn their head or use alternate compensation quickly and need to build up. It sounds like an odd thing to work on but I have had a lot of success with this and it is a bonus that it is easy for parents to carryover. 2. Trunk strength (over all core or one side lateral flexion) is often a big underlying issue for the babies I’ve worked with who have a tilt that just won’t go away. A focus on trunk strength in any way he will tolerate may help.
    3. There may be a completely different issue. I’ve found that when a tilt just won’t improve with my typical strategies, there is something else going on often where I wouldn’t expect it such as the things noted above or things like an asymmetric pelvis with one ASIS higher than the other, a restriction in trunk rotation either with upper body or lower body twist or even reflux issues (some babies will hold into a tilt to keep the food down – often spit up is no longer seen as they have found away to avoid the painful reflux by “fixing” into a head tilt). It seems that what should be a relatively straightforward impairments with torticollis can be such a mystery with some little friends. Hope he gets past his plateau soon!

  11. Lorraine Everest says:

    Have you explored total motion release. I’ve had great success with this concept for my torticollis patients that are lacking the last 10° of lateral neck flexion. If you go to total motion release.com you can look at videos of such kiddos. You can also contact me at the above email

  12. Terri S says:

    Make sure he has a vision exam. Sometimes a child’s visual horizon is off, which leads to continued head tilting. Also make sure he sees an orthopedist to rule out cervical spine issues. Good luck!

  13. Donna Bogdan Cordova says:

    Goldenhar S is strongly associated with vertebral and rib anomalies, which become more apparent with growth. Could that be the case here?

  14. Nancy Martin says:

    There is an article in our local healthclub’s magazine about an infant with torticollis being treated weekly by physical therapy, however her PT and her parents attribute her dramatic progress to the Infant Swimming Resource program which teaches children aquatic survival skills through their Self-Rescue program. You can find out more information by visiting http://www.InfantSwim.com, or by contacting ndavis@hachealthclub.com.

  15. diane borton says:

    Could there be something going on with this child’s vision or could there be a fused vertebra in his cervical area?

  16. Vicki Schwartz says:

    Please send this child to a therapist who is adept at Total motion release to stop stretching and evaluate the child’s whole body and treat accordingly. I hope that vision and depth perception has been evaluated. please no Botox.

  17. Silvia says:

    Hi Jill,

    I find that at 16 months stretching is impossible for Torticollis as well. I typically work a lot of the session in sidelying to tip the head in the desired direction and reach toys to rotate in the desired direction and it has been very effective with all of my Torticollis patients. I teach the parents this as well to embed the treatment. Have you tried this?

    Good luck Silvia

  18. Marcy says:

    Any chance of a hemivertibrae?

  19. Susan Klinger says:

    I have good results with Craniosacral therapy with torticollis. It’s nice because it is hands off especially with the older kids who just don’t tolerate strecthing well.

  20. Bernadette Girasek says:

    Jill,
    My recommendation is to find a myofascial release (MFR) practitioner in your area. The website for John Barnes approach to myofascial release has a directory of therapists by area and level of expertise. Often massage therapists perform this, but PT’s and OT’s also become skilled in this approach (and can bill insurance). My guess is that the structural patterns in this little guy are quite fixed and may extend beyond the area we traditionally think of when we treat torticollis. I hope this helps. Good luck!

  21. Britney says:

    I recently saw a child who wasn’t referred for his torticollis until after his 1 year well child check, and it was definitely more of a challenge. I would suggest the off center carry (carrying him at an angle with support under his right arm so that he has to tilt his head to the left to right himself) unless he is not strong enough for that, in which case I would start with the same carry with support between his ear and his shoulder to give more of a passive stretch while being carried for improved cervical sidebend. For rotation, you can carry him facing forward with support in front of his left pec and have him look for objects on his right (where is the clock? etc). I’ve had some success with tripod side sitting activities and with hiding things under small tables, chairs, etc so that he has to turn his head and lift it in prone/quadruped to find the objects. Standing in a standing board (I made mine with an old sliding board and a pair of surestep SMO’s) or holding his feet to keep his feet still and then having him reach for objects behind him so that he has to turn his head to find the objects is also helpful. Maybe try putting suction cup toys on a mirror so that he gets visual feedback while he plays (Party City sells 2″ suction cup balls in a 6 pack for like $3). However, with the fact that he has been going to therapy for nearly a year and has had improvements and regressions as well as continued head tilt despite increased PROM, I would also recommend being evaluated by a developmental optometrist for possible visual involvement, especially with his diagnosis of Goldenhar Syndrome. He may be suppressing or have poor vision in one eye and tilts his head to use the more dominant eye. You should be able to locate a developmental optometrist in your area by doing a search at covd.org. Hope that’s helpful!

  22. Adriana says:

    Did this Pt. have tests to ruled out a fused or incomplete vertebrae? With the Goldenhar Syndrome it is also possible that the muscles from one side may be considerably shorter than the others. If this is the case, even if the kid has a good passive ROM, he will feel more comfortable in the position where the muscle fibers are more relaxed. Have you tried Total Motion Release? They have a modified version to treat kids, they have had very good outcomes.

  23. Dena Dixon says:

    My toughest clients are also receiving Botox through Shriner’s in Portland. It sounds like you are doing everything else you can!

    Dena Dixon MS,PT

  24. Suzy says:

    Checking his vision is a good idea. You can try it yourself by patching 1 eye at a time and seeing if it changes his tilt. Also, has he ever had x-rays of his neck? I once worked with a little girl whose tilt was persistent and it turned out she had an abnormality of a vertebrae. Good luck.

  25. Tana says:

    With Goldenhar syndrome, strabismus is common. Any visual impairment may cause him to tilt his head to improve his vision, so his problem may be twofold. Is he being followed by an optometrist or ophthalmologist? You also may want to consult with a teacher for the visually impaired.

    I see a 2 year old with torticollis and what has worked for me is reading books to her while holding the book in a position that encourages her to actively rotate her head in the desired direction to see the pictures.

  26. Cathy says:

    I agree with Britney. Seek an evaluation with a developmental optometrist.

  27. Mandy says:

    Joanne Posts:
    Is there a chance seeing a physiatrist for Botox may help?

  28. Mandy says:

    Dora Posts:
    Hello I’ve had my share ot torticollis how is his neck side bending muscles? Most of the time these muscles become tight as well. I have had good results by placing child on a theraball supine and rolling him upside down once he is not afraid of thus position ill distract and het good stretching in this position . Good luck!

  29. Mandy says:

    Fraida posts:
    You should rule out any possible compensation for a visual issue, such as a muscle imbalance that can be causing the head tilt.

    Good luck!

  30. Isabelle Fontaine says:

    1)X-rays to rule out any specific bone alignment issues
    2)vision but it needs to be assessed by a developmental optometrist(not an ophtalmologist)
    3)MNRI method (Masgutova Neurosensorimotor Reflex Integration) will address all the underlying cause. It is a method based on the integration of the primitive reflexes. The head posture is strongly related to STNR, ATNR, TLR and oculo-vestibular Head Righting reflexes. The MNRI method also includes a hug facial-visual integration program. If the family has any chance to find a trained MNRI specialist, GO! I have been a pediatric PT for 20 years and discovered the MNRI method about 3 years ago, I am still in training (very extensive) and my whole perspective of PT therapeutic approach has been shifting towards such a better place! Reflex Integration is the KEY of neuromotor development. Find info about the method at masgutovamethod.com Isabelle

  31. Michelle says:

    I would look into vision therapy or vestibular responses. They are two large sensory systems that play into the muscular system. Or have a peds Occupational Therapist evaluate him.

  32. Jill says:

    THANK YOU ALL so much for all of your incredible insight on this little guy!

    To answer some of the questions…I haven’t considered Botox, as I don’t think that tightness is the primary issue. (based on his passive range that we do get, even briefly.) And I also don’t think he would let us stretch him much, even if Botox were done. He just doesn’t like being restricted. I do think he has weakness on the over lengthened side though, and still needs strengthening.

    We have considered vision as an issue, and he has seen an ophthamologist. I like the idea of pursuing a developmental optometrist to get another opinion though. And I like the suggestions of considering a vestibular issue as well.

    He was recently seen at a craniofacial clinic, and it sounds like they are going to be doing some x-rays to rule out bony anomalies, so I will be anxious to hear what comes of this.

    I also want to say thanks for the great treatment ideas! I feel like I now have a handful of new things to try…we have definitely done a lot of sitting and righting in my lap and on the BOSU and Therapy balls. But I love the idea of standing on a balance board for play, and hopefully he will tolerate that better.

    I have already referred him for craniosacral, but will also look into total motion release (which I had never heard of and am excited to learn more about) and myofascial for him as well.

    Thanks again! I really appreciate all of your thoughts!!

  33. Brandy says:

    I would get an MRI to r/o vertebral anomalies, an opthamologist exam to r/o visual disturbances, check the pelvis and any tightness/weakness/assymetries throughtout the core, craniosacral therapy (someone who works with peds obviously), and last resort (don’t get mad at me PT’s!) chiropractor? I have a friend who went to a specialist in peds/torticollis issues and had great results. But before that I would recommend the orthopedist to r/o vertebral anomalies.

  34. Lana says:

    Hi just wondering if you found out what was causing the little ones tort and if it resolved?

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