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muscular torticollis

JacksMom
22 years ago

Hi all,

Anyone had any experience with this? My DS tilts his head more to one side than the other. I mentioned this to the doctor at his 4 month checkup today and he thinks it might be muscular torticollis. He recommended that we see a Physical Therapist to correct the problem. I've looked up the condition online but would like to hear some first-hand accounts of a mom whose dealt with it.

Thanks,

JacksMom

Comments (3)

  • Karla_NE
    22 years ago
    last modified: 9 years ago

    JacksMom,

    Yes, our DD, Sheridan, had muscular torticollis too. We noticed it around 10 weeks of age that when she would turn her head it was only to one side, and tilted too. At first we thought not much of it, but when we realized that it hurt her when we tried to have her turn her head the other way, we got worried. We did some research on-line before taking her to the pediatrician, and found information about torticollis. It appeared to match her symptoms. So, we took her to the pediatrician and she confirmed that is what DD had. She said it was normal that it was not noticed yet, because DD had just started to really try and move her head more. Anyway, luckily our DD's torticollis, like your DS's is only muscular. There is a much more serious kind that involves the actual bones being the problem, instead of the muscle, which then requires surgery. Our pediatrician recommended a PT as well, and reassured us that this condition was nothing to freak out over. That was hard for me to do as a first time Mom! I still remember she said, "If this is the worst thing you have to deal with for your DD's health, this is nothing!"

    So, we took DD to a Pediatric PT, and she was very nice. She worked with DD on a play mat and had toys there. We were in the room with her. The PT agreed after looking at DD that her torticollis was not that bad, and that with therapy she would be fine. So she went through a series of exercises with DD, and gave us information on how to do them at home with DD. The biggest thing she stressed to us when we asked how long it would take to "cure" her, was that if we were consistently doing her exercises with DD as prescribed, it would be fairly soon. If we did not, it would take MUCH longer, or possibly even lead to permanent problems. So we did the exercises with DD at home. The exercises are basically stretches for the muscles in that area. We would turn DD's head from side to side while she was laying on her back, and hold her head in that position for a few seconds. So if we turned her head to her right, at the same time we would hold down her left shoulder, and vice versa. There were a few other ones too, but that was the main one for us. The big thing was initially DD's muscles were so tight there, she would really fuss when we did the stretches. I felt like such a mean Mom making her do the stretches!! The PT reassured me that it was not hurting her, it was just uncomfortable for her, and it had to be done for her to get better. The more we did the exercises the more DD got used to doing them and the more improvement we saw. We would sing to her a lot or make goofy noises, or shake a toy in front of her to try and distract her while we did the stretches. We saw the PT two more times, so a total of three times. I would say from the time she was diagnosed to the time she was 99% better, was about 2 - 2 1/2 months. One other thing the PT stressed, was that if DD was sick or tired, she may revert temporarily to holding her head in the tilted way. After we stopped doing the exercises there was about two or three more times in the next few months were she started tilting her head again and we would just have to do the exercises with her again for a few days to get her muscles stretched again.

    I know this is a really long post, but I wanted to give you as much information as possible. Try not to stress over this. I know how hard it is, but trust me as a parent who has been through this -- get the treatment and he will be ok!! Sheridan is now 14 months, and you would never know she had torticollis. Please feel free to contact me via the link on My Page if you want to talk about this offline, or you can post more here too.

    Take Care!!

  • tunneldiver
    22 years ago
    last modified: 9 years ago

    My DD was also diagnosed with torticollis at 4 months. I had brought her flattening head to the MD's attention, he sent us to a ped. neurologist. he suspected torticollis but had us run an Xray to check the condition of the sutures in her skull (the cracks where the plates meet)Since she was so tight on one side, she always laid her head the same way, which had flattened her head quite a bit. I am a physical therapist asst, so luckily I was familiar with the treatment and did the stretching at home. I also applied mild, MILD, heat packs to her neck to help before the stretches ( A sock filled with raw rice, heated in microwave, used cautiously!!)

    She soon gained full range of motion. I also bought one of those supersaucers so she would have to get her head off that side. As a newborn, I always rotated her position, but later looked at pictures and realized she always tilted one way. She is now 4yo, she is still slightly lopsided (only a mother would notice), when I wash her hair, from up above I can tell.

    It is great that you caught it, mild stretching and exercise should correct the problem. Make sure you get the Physical Therapist to watch you do the stretching to make sure you are doing it correct. Your baby may resist a little, make sure to not let his shoulder come up when you rotate his neck. Look at drawings of the SCM muscle (sternoclaidomastiod) to see where it connects to you can visualize what you are stretching. You can also ask the PT if they have experience with myofascial release techniques. I found it to be very helpful in my child, and in my adult patients I would treat.

    Of course, this is all just my experience with this, ask a lot of questions so you won't be nervous, but this should be easily resolved. Good Luck!

  • nataliea140
    15 years ago
    last modified: 9 years ago

    I was born with Torticolis and suffered with it until the age of 9/10 until I finally had surgery to correct it. My head was permantly tilted and cause me alot of physical and emotional pain as it effected my childhood and my primary school days consisted of being bullied.
    I was told I looked "weird" and I believed I was abnormal and ugly.

    I am now European Princess, I represent my country all over Europe and i compete in other high beauty pageants, I have also modelled for several charities.

    I am writing this to prove, that even if you have this disability, I know whats it's like, I know how hard it is. But I am hoping that this shows never to give up, because Torticolis can be treated and it should never let you stop achieving what you wish for.

    Natalie x

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