Special Needs

Tot Collar

Hello - I am new to this board!  After about 5 months of PT it looks like the next step for our son's torticollis (tilt) is going to be the tot collar.  I don't want to go this route but the stretches don't seem to be working and he favors the one side when he is playing, etc so that its not helping either! Our son will be 8 months next week and he is a tiny but very active baby - crawls, pulls up, etc.  Anyone else had experience with the tot collar?  Did it work?  How long did it take to work?  He sleeps on his tummy and turns head side to side and seems to get a good neck stretch while sleeping (in addition to our stretching him) so I am frustrated as to why this issue is persisting.  Thanks!

Re: Tot Collar

  • imagephotogirl07:
    Hello - I am new to this board!  After about 5 months of PT it looks like the next step for our son's torticollis (tilt) is going to be the tot collar.  I don't want to go this route but the stretches don't seem to be working and he favors the one side when he is playing, etc so that its not helping either! Our son will be 8 months next week and he is a tiny but very active baby - crawls, pulls up, etc.  Anyone else had experience with the tot collar?  Did it work?  How long did it take to work?  He sleeps on his tummy and turns head side to side and seems to get a good neck stretch while sleeping (in addition to our stretching him) so I am frustrated as to why this issue is persisting.  Thanks!

    P had tort and we started PT at 2 months for it.  I honestly have never heard of the tot collar, i'm going to google it now though!

    I would just say that, torticollis can be positional from utero/birth/newborn period or neurological.  Have you seen a neurologist for a full work-up just to make sure nothing else is going on? 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • No, we have not seen a neurologist.  Do I need to bring that up with his therapist?  I wonder why it has not been mentioned?  Our son started at just under three months with the PT.  I was hoping that once he started sitting up and crawling he would hold his head straighter - but no such luck.  When we go to PT she says his neck is tight.  He can turn great side to side, so I think maybe the one side is weak and I don't know how to strengthen it because the stretches don't seem like they would help with weakness - only tightness.
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  • imagephotogirl07:
    No, we have not seen a neurologist.  Do I need to bring that up with his therapist?  I wonder why it has not been mentioned?  Our son started at just under three months with the PT.  I was hoping that once he started sitting up and crawling he would hold his head straighter - but no such luck.  When we go to PT she says his neck is tight.  He can turn great side to side, so I think maybe the one side is weak and I don't know how to strengthen it because the stretches don't seem like they would help with weakness - only tightness.

    The weakness would be another reason I would want to see the neuro.  

    You could ask the PT her thoughts on seeing a neuro but depending on your insurance would be if you need a referral (which would come from your pedi).  If you don't need a referral I would just look for a local pedi neuro that is covered under your insurance and have your child's records sent there.  You could also discuss with your pedi if they think he should be seen, etc.  Personally, regardless of what they said I would want a neuro workup, but that's just me and comes from our experiences.   

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Hey!  My son had mild to moderate torticollis and PT alone helped. But I do remember people on the Yahoo Torticollis group discussing the TOT collar.  Are you a member? Here's the link if you haven't heard of it.

    https://health.groups.yahoo.com/group/Torticolliskids/

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  • Thanks everyone for the information!  I am going to look into the yahoo group and also talk to my husband about the neurologist.
  • Another option is to rule out any vision issues with a pediatric opthalmologist. Sometimes tort can be caused by a focusing or vestibular issue. The child will tilt their head because that is the best way to get both eyes to work together.

    I think Nate's tort is positional. I had low fluid levels the last few weeks and he wasn't a real mover and shaker. I bet he spent the whole 38 weeks in the same position.

    His trunk is also pretty tight on the same side as the tort. (He twists to reach behind him better on one side)

    WAY 2 Cool 4 School


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  • imageAssembly_Reqd:

    Another option is to rule out any vision issues with a pediatric opthalmologist. Sometimes tort can be caused by a focusing or vestibular issue. The child will tilt their head because that is the best way to get both eyes to work together.

    I think Nate's tort is positional. I had low fluid levels the last few weeks and he wasn't a real mover and shaker. I bet he spent the whole 38 weeks in the same position.

    His trunk is also pretty tight on the same side as the tort. (He twists to reach behind him better on one side)

    ah yes good call!  I always forget about the vision aspect!

    I didn't have low fluid with P, but many things could 'explain' her tort.  M had super mild mild tort and I did have very low fluid with her, it's why I was induced. I had her evaluated by an outpatient PT who seemed to think it was more reflux related than true tort.  P was pretty squished though since i'm only 5'0 and she was a pretty average size baby.  

    OP the doctor you would see to look at his eyes would be a pediatric opthalmologist.  

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • I have to say I think some of the ladies on this board are jumping the gun. We dealt with torticollis with DS and it was never even considered to go to a neuro. I say work with the PT and see where you are in a few months. DS started pt at 2 months and was released at 8.
  • imageAndrewsgal:
    I have to say I think some of the ladies on this board are jumping the gun. We dealt with torticollis with DS and it was never even considered to go to a neuro. I say work with the PT and see where you are in a few months. DS started pt at 2 months and was released at 8.

    I would rather offer advice that someone ISN'T going to get elsewhere.  

    P looks 100% typical, everytime I was questioning what was going on our original pedi would say, "look at her, she's perfect."

    I'm not trying to scare anyone, and I don't think OP is scared, but IMO their is no such thing as jumping the gun, in terms of finding out a greater cause.  If he's been in PT for 5 months with no real results, it's time to get the opinion of a neuro.

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • imageAndrewsgal:
    I have to say I think some of the ladies on this board are jumping the gun. We dealt with torticollis with DS and it was never even considered to go to a neuro. I say work with the PT and see where you are in a few months. DS started pt at 2 months and was released at 8.

    You have a valid point based on your experience with your child.  I am sure the OP knew that asking on the Special Needs board would get her more of a variety of experiences than posting on the typical baby boards.

    My child has tort. He also has neurological AND vision issues. A this time we are pretty confident why the tort happened. It was womb position probably based on his neurological issues and exacerbated by low fluid. Since he didn't even roll over until to tummy until 8 months, it is highly likely that rolling over in the womb wasn't happening.

    I had no clue that vision issues could cause tort. She could be buying a tot collar to stretch out the neck muscles and then at the end of the day still have a kid with tort.

    WAY 2 Cool 4 School


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  • I think getting things checked out further won't hurt anything. My experience was that my son has vertebral anomalies so no amount of stretching will help his head tilt. It could be he just needs some more time with the pt, but it wouldn't hurt to consult with neuro or ortho...
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