torticollis

Amanda - posted on 09/18/2009 ( 16 moms have responded )

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I just started a new community called moms of children with torticollis. My son was diagnosed a few months ago and I could not find a community for this already. I dont know very much about it and I was hoping by starting this community that I could meet others in my situation. Hopefully we could all share ideas and advice. If you are or know someone that has a child with torticollis please have them join.

thank you

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Miranda - posted on 09/18/2009

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I have a two year old son, Weslee who was also diagnosed with torticollis at about three months. I remember one day I was wiping his face and neck down and felt a really strange lump. It completely freaked me out because I was afraid it was a tumor or something. We took him to the Dr. the next day and she ended up having us take him to a specialist and we came to learn he had torticollis. We ended up taking him to months of physical therapy and having to do stretches at home. At one point he was fitted for a helmet and wore it for about two weeks. At this point we visited the pediatric specialist for head and neck problems. Upon realizing Weslee was in a helmet he investigated his head to make sure he agreed with this treatment. After doing so he told us there was absolutely no need for the helmet and his head would be perfectly fine down the road. He told us to take him out of the helmet and let him grow into his head. Sounds funny but our son also has quite a large noggen!! :) Now as a two year old he is perfectly fine and there are no issues. His head seems like a regular two year old head. So I share with all of you this particular experience. If I can shed any light on the subject the only thing I would advise is to always get a second opinion. I am glad my son didn't have to be in a helmet afterall because it would have been pointless. I certainly believe that the helmet is very helpful, but for kids who have more severe cases. And I know it does help. But in our situation it seemed they may have used it more for preventative measures instead of something he actually needed. And no one wants their baby to be stuck in a helmet if they don't absolutely need to be. The most important part of the story for me and it seems for many of us, is that it will get better and they will improve and be just fine in time. So thank you for listening to my story and hopefully this was helpful or at least connective to the rest of you. Any questions let me know.... And I would love to ask if anyone else went through the helmet confusion like us?

Shanaselender - posted on 06/02/2012

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my child was diagnosed at 2.5 months and they sent us to PT. he is now 3 mos and we are doing the exercises at home but our baby is so resistant. he will only turn his head if we guide it with a bottle. how long did it take most of you to get your kids comfortable with the exercises? are your children sleeping on any type of aid or pillow to alleviate weight on their head. we are in a race against the clock to avoid the helmet. its a good tool but very expensive and so constricting for our little one. last thing, my son is 14.8 lbs and we really want him to be able to lift his head during tummy time. how much weight would the helmet add?

Marisa - posted on 04/25/2011

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My three month old has torticollis on her left side. Our public health nurse referred us to a free repositioning class at the children's hospital, and they asked our daughter to be part of a study incorporating physio to strengthen muscles and stretches, as well as positions to have them sit in to expose the flat area. It is alot of work but the more we practice what we have learned the better it has gotten. There is no need for a helmet until they are six months, so do everything you can to avoid it! they have to wear them23 out of 24 hours in a day and they are around $1500.

Julie - posted on 09/18/2009

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My grandson was diagnosed with Torticollis when he was a few months old. Has your son been fitted for a helmet yet? Or is your Doc using another form of treatment. By the way, my grandson is 2 now and is perfectly fine...no lasting effects.

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Harriet - posted on 02/06/2013

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Heather

My little girl has just been diagnosed with Torticollis at 4 months ,,,,, we have exactly the same problem with tummy time she will only turn her head her favoured way the whole time it looks so uncomfortable. she gets frustrated too. Wonder how tummy time can help if this is all she does
xx

Shana - posted on 10/09/2012

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Angela,



I took my son to children's hospital to their neuro department. It was worth it for them to assess whether his ears were in alignemnet or bneing pushed off by the torticollis. With tons of tummy time and daily aggressive pt ( consistently doing the exercises), we worked through his mild tort and the flat spot has started to round out.



He is now 7 mos. Get it checked out now to get peace of mind.Good luck.

User - posted on 10/09/2012

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Hi, I'm new and unsure how to work this. My daughter has torticollis and is almost 3 months. she always looks to the right and has a flat spot on her right side. She also will keep her left shoulder up (like she is tense) causing her shoulder to squish her ear. We are doing PT but I'm noticing her ear is smaller and further back and lower on her left side. Is it normal for the ear size to be off or is this related to her torticollis?

Heather - posted on 09/05/2012

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My son was diagnosed at 2 1/2 months and is now 3 1/2 months they said that it was a mild case because he didn't have any flat spots but we were still referred to physical therapy. It seems to be working but he still refuses to turn his head one side when he is on his back but when he is upright he will turn it both ways it doesn't make any sense and my therapist says she is becoming baffled because she can't tell if he is just stubborn or if he is actually unable to do it on his own and during tummy time his head still remains tilted and it is hard to keep him on his tummy because he freaks out after like 10 minutes it is just becoming so frustrating. Does anyone else have these. issues?

Amanda - posted on 04/25/2011

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Sorry it has taken me a few days to get back with you, with Easter and all I havent even checked my email in afew days. I know it is easy for me to say but please dont be scared :) My sons tort was never severe enough to result in plagiociphaly but I have worked with one little boy that did have it. He was put in a helmt and with in a few months the distotian was hardly noticable :) I am wondering why the dr told you your son is considere speacial needs? Is it because of the tort? Do they mean speaial needs as in mentally challenged or just the speacial attention the tort will require?

User - posted on 04/23/2011

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my son is 4months old he was just diagnosed with torticollis and plagiociphaly. we have just started therapy and he gets a helmet ine a week. its very scary the doctors told me he is considered special needs, when they told me that i fell to pieces. he is also getting facial disformia. i am so scared, i feel like i need more answers. i have never met anyone who has a child with the same condition.

Julie - posted on 09/19/2009

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I am so glad that you won't have to deal with your child wearing the helmet. My grandson Liam used it for a while, but every time we put it on him he would scream...it was not pleasent. The PT helped alot. Keep doing it on your own...espically the tummy time, like Rebecca said. I think that is what helped Liam the most. My daughter and I would take turns laying on the floor with him and doing his excersises.

Amanda - posted on 09/18/2009

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-Stormy torticollis is when one of the muscles on the side of your neck is to short and or tight, as a result the head tilts to that side, mostly this happens in infants as a result of either the way they laid in the uterus or a birth trauma, in severe cases babies will develop a flat spot on the side of their head that leans and have to be fitted with a helmet, the condition is usually able to be corrected with physical therapy however I have read that if it is not taken care of by one yr old that the muscle is not as strechable and will require surgery.



-Julie no my son has not needed the helmet, we are going through physical therapy since it is still pretty mild, the problem is that our ins copay for pt is 50.00 and we really cant afford that so I am doing the pt on my own at home. :(



--cristina does your dr think the tort and the developmental problems could be linked somehow? Is there any thing I could be looking out for? My son is 7 months, was diagnosed around 5 months and we have been doing pt on our own here at home since.



-Rebecca,my son does get alot of tummy time since he is 7 months, and his r.o.m. has gotten so much better but the tilt is still noticible, at least it is to me but I can be anal sometimes so I could be making a mountain out of a molehill, no flat spots so no helmet but we are quickly approaching the one year mark when I have heard that if the tort is not gone by then that surgery will be required. I have been doing pt stretches at home since our copay is more than I cam afford, what sort of more stretches would you recomend?



-yaima has your dr recommended anything for you to do that will be a more permanent fix instead of it coming back?

Yaima - posted on 09/18/2009

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HI MY DAUGHTER HAD FLAT HEAD SYNDROME AND SHE WORE THE HELMET TO MOLD HER HEAD. BECAUSE OF THE FLAT SPOT ON THE BACK OF HER HEAD SHE DEVELOPED A MILD TORTICOLLIS. SHE FINISHED HER TREATMENT FOR THE HEAD A COUPLE OF MONTHS AGO. YOU CAN HARDLY TELL AND HER TORTICOLLIS SHE HAS IT ON SOME OCCASIONS. I DO SOME EXCERCISE FOR HER NECK AND IT GOES AWAY IN 2 OR 2 DAYS. I JUST KEEP DOING THE EXCERCISES AND IT HELPS HER ALOT ON NOT GETTING TORTICOLLIS. THE EXCERCISES ARE REALLY REALLY GOOD. PHYSICAL THERAPY IS ALSO GOOD BUT THANK GOD IT HAS NOT BEEN THAT SERIOUS FOR ME TO TAKE HER.

Rebe - posted on 09/18/2009

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Hello! My son was diagnosed at 2 months and we started PT at 3 mos old. I can't emphasize enough the importance of going to PT, doing the stretches at home and making your son do as much tummy time as possible - at LEAST an hour a day.

My son had to wear a DOC Band (helmet) from 6 mos to 9 mos of age, because he had a flat spot due to the torticollis. We were released from care just after his first birthday and now at 1.5 yrs you would never be able to tell there was anything wrong with him.

Feel free to send me a message if you have any questions. It was a rough thing to go through at times, but now - thankfully a distant memory for us! I'm willing to help as much as I can!!
Rebecca

CHRISTINA - posted on 09/18/2009

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Hi my name is cristina, i'm a mother a of twin girls. One of them was diagnosed with torticollis at six months and since than she has had physical therapy. Also her physical therapist though she might have other problems and she was right, my daughter was diagnosed with Digeorge Syndrome witch causes development delayes, this is another reason why she is still in therapy. She is now 17 months and you can barely see her Torticollis, all the help that you can give your son by stretching him will benefit him a lot.

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