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Torticollis & Plagiocephaly

nursej519nursej519 member
in Special Needs
My LO is 11 weeks (born at 35w4d) and was diagnosed with torticollis and plagiocephaly two weeks ago. We started seeing a PT last week who recommended home stretches to do, but wasn't really concerned about the flat area on her head, although DH and I think its very noticeable. She didnt give us any repositioning techniques. The PT also mentioned things like possibly needing a helmet, and if my LO had vision or hearing issues (which she doesn't to my knowledge). I am so overwhelmed!

After the appointment with the PT, I came home and cried! I have become more hyoervigalent about everything with my LO. Now I am.also concerned about her other motor skills, I.e. she can't hold her head up fully yet and she is not able to push up during tummy time.

I guess I am just looking for other parents who have gone through the same thing and some advice.. Any suggestions for repositioning? I trt to turn her head at night but she just turns it back. Also, should I seek additional help for her motor skill delays at this time? Should i look furthur into possible vision/hearing problems? Any other advice that could be offered would be great too!
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Re: Torticollis & Plagiocephaly

  • banfrogbanfrog member
    My DS1 had very noticeable flattening on the one side of his head. At the recommendation of his pediatrician we rolled up a receiving blanket and tucked it on the flattened side so he couldn't lay his head flat on that side. I also took the pains to always have the not flat side down while I nursed him (so cross cradle on one side and football hold on the other). His head eventually rounded out and we didn't have to do the helmet. He has not had any vision or hearing issues. He also hated tummy time but we worked on that too. He would tolerate it better if instead I laid him on my chest (or DH's chest) and shook a rattle or other noise making toy to get him to look up and around. It's frustrating but stay diligent.
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  • nursej519nursej519 member
    @banfrog did you put the blanket under your LOs back or head? I've tried her back but she just scootches herself off it!!
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  • banfrogbanfrog member
    Head. His pediatrician even suggested the head support things you can put in a carseat. He'd wiggle away with the blanket but I just kept putting it back. It took awhile to see results. I remember crying about it lots and feeling like I was failing him as a parent for it. He's 4 now and you can't tell he ever had issues with his head shape.
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  • nursej519nursej519 member
    I'm glad I'm not the only one to she'd some tears over this!! I keep turning her off the flat side but she just turns it right back. Stressful! Her neck is getting much stronger now so that is less of a worry for me.
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  • Snoflakes4evaSnoflakes4eva member

    My LO was born at 33 weeks. And had a helmet. I promise you a helmet is not a big deal (although it feels like one now!) LO wore it for 11 weeks and I only got one stupid comment from a stranger.

    We tried repositioning and extra tummy time but it did nothing. LO developed a flat spot, most likely, because of his time in the NICU.

    So my advice is to embrace the helmet, and as soon as your ped tells you to get one, RUN and get one. Because the younger they are when they start wearing it, the less time they will spend in it.

    My LO got his when he was 6 months (4 months adjusted) and had to wear it for 11 weeks. He didn't even notice it. It never disrupted his sleep or playing. They only issue is that wearing the helmet is like wearing a winter hat, they can get hot! So if possible, get the helmet during the cooler months. And its annoying because your LO will need a bath every day while wearing it.

    If you have any questions about getting a helmet, let me know!

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    Baby Birthday Ticker Ticker
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  • nursej519nursej519 member
    Good to know. thanks.
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  • Dannylion24Dannylion24 member
    You could possibly try a 'noggin' nest' cushion to help w head shaping!
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  • nursej519nursej519 member
    We did get one for her car seat @Dannylion24 . today, I am having a really hard time not blaming myself for this. So many "if only's..." Are running through my head. Being a parent is hard!!!!
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  • rsweethartrsweethart member
    Two out of my three kids have/ is going thru this. The PT we are using now does TMR and the results are so much faster with my son than with my daughter.
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  • ladyteach0505ladyteach0505 member
    edited August 2015
    @nursej519 You have PM.  Actually, I sent you PM with a question before I even saw this.

    We are on the SAME page.  I cried on the way home from PT today because the PT acted like DD is having sensory issues, which got my mind racing about problems... And I'm not even having DD see her for that!  She did say that DD's eyes might be weaker because of the Tort.  But since DD is 3 months I guess a lot of those tests/evals don't happen until around 5 months.  Did yours say why the hearing could be an issue? I've never heard that, but DD almost failed her hearing screen at birth, so I'm wondering if that was a coincidence or not...

    I hear you on the guilt.  It's awful. BUT that said, at least we are the kind of parents who have gotten intervention early.  

    As for nighttime, DD will NOT stay off of her bad side.  Our PT recommended a Tortle (check out Amazon).  We bought it, but honestly, I'm nervous to have anything on her head at night because the WTE book talks about not having kids wear hats at night.  So I told the PT this and she said to just not worry about her head at night.  I still do. :(  But yeah. As for other interventions, I've researched everything in my state in terms of early intervention/autism/etc and have a list of resources to call at the ready.  I'm holding back for at least another month or two because the PT acted like you really can't say for sure if there will be issues until closer to 5 or 6 months.  But my anxiety feels -slightly- better knowing I have numbers to call if we need to.  Or if I cave and decide I need information sooner than that.

    No one tells you how hard this all is. :(

    I'm also paging @bigboobsmcgee because she is super knowledgeable about all this.
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  • nursej519nursej519 member
    @ladyteach0505 I am constantly an anxious mess over this.. I have taken so many pictures of my LO head and see that it may be *slightly* rounding out but not as fast as I want. I have been trying everything possible but I am still struggling. There are a few fb support groups I found which help me I knowing I am not alone, BUT they are all very PRO helmet and I am wanting to do everything to prevent that.. My LO really refused to turn her head to the right at night but we just kept trying and now she will do it on her own occasionally. I cry over this regularly because I feel guilty that I can't fix it!! You aren't alone... We are in this together.
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  • ladyteach0505ladyteach0505 member
    Hugs @nursej519

    My niece is a month older than DD and has the flattest head my PT has ever seen after I showed her a pic. She said she would helmet her, but SIL's ped isn't concerned. Is it sad I'm using that as reassurance?
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  • Knottie1442268460Knottie1442268460 member
    Get In early Intervention ASAP!
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  • BigboobsmcgeeBigboobsmcgee member
    ladyteach0505 said:
    @nursej519 You have PM.  Actually, I sent you PM with a question before I even saw this.

    We are on the SAME page.  I cried on the way home from PT today because the PT acted like DD is having sensory issues, which got my mind racing about problems... And I'm not even having DD see her for that!  She did say that DD's eyes might be weaker because of the Tort.  But since DD is 3 months I guess a lot of those tests/evals don't happen until around 5 months.  Did yours say why the hearing could be an issue? I've never heard that, but DD almost failed her hearing screen at birth, so I'm wondering if that was a coincidence or not...

    I hear you on the guilt.  It's awful. BUT that said, at least we are the kind of parents who have gotten intervention early.  

    As for nighttime, DD will NOT stay off of her bad side.  Our PT recommended a Tortle (check out Amazon).  We bought it, but honestly, I'm nervous to have anything on her head at night because the WTE book talks about not having kids wear hats at night.  So I told the PT this and she said to just not worry about her head at night.  I still do. :(  But yeah. As for other interventions, I've researched everything in my state in terms of early intervention/autism/etc and have a list of resources to call at the ready.  I'm holding back for at least another month or two because the PT acted like you really can't say for sure if there will be issues until closer to 5 or 6 months.  But my anxiety feels -slightly- better knowing I have numbers to call if we need to.  Or if I cave and decide I need information sooner than that.

    No one tells you how hard this all is. :(

    I'm also paging @bigboobsmcgee because she is super knowledgeable about all this.


    Damn! I missed this whole post.

    OP, how are things now???

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  • BigboobsmcgeeBigboobsmcgee member

    My daughter was diagnosed with torticollis and plagiocephaly at 4 weeks old. We caught it super early. This is my second child but I was a friggin mess. I was so upset because something was "wrong" with my baby. I also blamed myself.

    It didn't take me long to realize that I shouldn't be sad, but I should be GRATEFUL that my wonderful daughter can be FIXED. Tort is not a death sentence. Yes it means more work but luckily our kids can recover from it.

    After 3 months of physical therapy and 2 months of a helmet, DD is gorgeous and doing fine and I know that I can handle speed bumps in the road.

    OP what ended up happening with your LO?

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