Infants with Torticollis, how do you moms manage?

Kayla - posted on 11/05/2010 ( 10 moms have responded )

26

92

0

I am not necessarily a new mom I have 3 children. However I have a 1 month old little girl who has torticollis in her neck. This is new to me!! Any of you moms whose infant has this condition or moms who have knowledge on this condition can you help?? I am basically wondering....

1. Sleepless nights with uncomfortability and ways to keep her head in position while sleeping

2. PT exercises to do at home

3. Medical awareness

MOST HELPFUL POSTS

Christy - posted on 11/08/2010

2,218

41

438

Most less severe forms of this won't result in a permanent head tilt. However my son still has some slight tilting and his face is slightly asymetrical. Like I said his head was literally smashed to one side tightly for 6 months. Once the muscle was released (eclesiastoid muscle, I think it's called), the DR suggested a helmet for his head to make it more round. We went in for an evaluation and discovered our insurance wouldn't cover the helmet, nor the required adjustments (in excess of 8 thousand bucks)! So we went without it. His head is now rounded out and looks fine. My son never had a skull xray, he had an MRI on his head, though. The MRI shows the soft tissue a lot better than an x ray does.

Christy - posted on 11/06/2010

2,218

41

438

My son, now 3 had a severe case of this. It was diagnosed by his pediatrician who had it himself as a baby! Most of the time, at home stretching and PT is a must. In my son's case, the stretching and therapy didn't work and he had minor surgery to release one of the neck muscles in his neck. After that he was able to move his head around freely. He has a slight tilt to the head now but it is better than the 90 degree angle his head was in before that! He got the surgery at 6 months of age. Prior to the surgery, his face was asymetrical b/c his head was smashing into his shoulder. It's best to get it fixed while they are babies and not when they are older.

10 Comments

View replies by

User - posted on 02/15/2015

1

0

0

My baby just turned one. I've been doing pt with him since 3 months and struggling to keep a consistent good news that he's improving. He's wearing a TOT collar all awake hours of the day. I'm so emotionally, physically, and mentally drained from not seeing the improvement needed. He has a severe case, next step is talking about botox with a physician. Surgery has also been mentioned. Anyone in my shoes have any advice about what they did? I Am on mental break downs often as I feel I can't do it anymore. Suggestions, positive reinforcement appreaciated!

User - posted on 06/07/2013

1

0

0

has anything gotten better with your now almost 3 yr old..my 3 month old was just diagonosed with the same thing and she is also my third child i have never been through this before

Teresa - posted on 03/05/2012

3

0

1

My 4 month of son has had torticous sicence he was born and from that now he has one side of his head is flat so hes getting the helmet and was told about botox shots they can give him to help him move his head. Dont know anyone who child has had the botox has anyone went threw that please let me know.....

Christy - posted on 11/08/2010

2,218

41

438

Also the stretching we did prior to the surgery was painful for him, as it should be sadly. Your goal is to loosen the muscle to make movement easier. Again this is based on my DR's recommendations at that time.

Letha - posted on 11/07/2010

2

20

0

if you have any other questions you can send me message she also went through physical therapy at home and they taught me alot of things to do with her

Letha - posted on 11/07/2010

2

20

0

My 4 year old also had this i suggest you to get a boppy pillow this is what i did i put her on her belly starting out a couple minutes at a time whatever you can handle and the baby the work the time up this helps to strength that muscle also when you feed the baby put bottle toward what ever side the baby has the torticollis on this helps also put toys on that side so they have to use that musscle i did all this from 4 months to 9 months and at 9 months you could hardly tell anything was even wrong and now you can not even tell anything was wrong with her.

Renae - posted on 11/07/2010

2,209

23

156

I have heard of it, but admit I doubt I know more about it than you do. All I know is that its a spasming of the neck muscles that restricts movement and usually forces the head to one side and is treated with physio and sometimes surgery - see, all things you already knew!

I thought that they make head positioners specifically for babies with torticollis? And you can buy them through a paediatric physiotherapist?

Unfortunately there is not much you can do about the sleepless nights when the waking is due to pain or discomfort. Baby's survival instincts are programmed to wake and cry when pain signals hit the brain. My advice on the sleep thing will be the same that I give to clients with reflux and colic babies, do what you have to to survive, forget about whether creating bad sleep habits (if the sleep deprivation gets really bad), and come see me when the pain is gone :).

Kayla - posted on 11/06/2010

26

92

0

Christy,
Will they always have that tilt, even with the PT. We have started her on it, but mainly just moving her hed from side to side and massasing the muscle Ahe is one month old now. Her pediatrician wants to do a skull xray at 2 months and go from there so we will see :) Hope for the best and thanks for the reply. Most moms havent heard of it!!

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms