Our Plagiocephaly/Torticollis story

I have been wanting to write about our experience with plagiocephaly & torticollis for awhile now in the hopes that it could possibly help someone else who may be going through the same thing we did.

Here is our story:

Natasha was head down the entire pregnancy. As far as we were aware, she did not have a flat spot when she was born. At around 6 weeks we noticed a tiny flat spot on her left side so we brought it to the doctor's attention. She agreed and told us to pay close attention to how Natasha lays down when she was sleeping (at that time they slept in the pack 'n' play in our room). We tried to turn her head when she was asleep but she always turned it back. We rolled up a blanket and put it on her left so she would move her head but she was so strong and found a way to turn her head back towards the left. At their 3-month app't the doctor noticed that it was not getting any better. She sent us to a neurosurgeon first just to rule out any issues with nerves/brain etc. She got a clean bill of health from him. Even though it was not his field he told us that she did have plagiocephaly.

My DH and I didn't want to wait for the next app't with her doctor so we started doing research ourselves about her condition. We figured there must be some reason as to why we were having such a difficult time repositioning her head so she would turn to the right. This is when we read about torticollis. At Natasha's next appointment we mentioned it to the doctor and the doctor agreed that this is probably what she had. The doctor then decided to make a referral to the neurology department at our local Children's Hospital. The problem with that was that we knew we would have to wait for that app't as the hospital is very busy and then we would have to wait even longer for that department to refer us to the physiotherapy department.

So, once again, my DH and I did some research ourselves and read that Chiropractors can do great things for babies with torticollis. We found a local Chiropractor who specializes with babies and he has dealt with many with torticollis before. He could see us right away (yay)! So at about 4.5-months old Natasha starting going to the Chiropractor. He assured us that he was not going to crack anything or doing any quick adjustments like he does with adults. With babies he is a lot gentler and puts very light pressure on her neck (as much pressure as you would put on your closed eyelid). She started going 3 days a week and we quickly noticed an improvement in her mobility.

A couple weeks later we had our app't at the Children's Hospital and they confirmed it was torticollis and referred us to the physiotherapy department. Natasha had her first physio app't when she was 6.5 months old. They showed us an exercise to do with her at home and asked us to come back in a month. We went back in a month and they said she had improved immensely and to come back for one last time a few weeks later. At her 3rd app't she was released from physio.

Today, at 9-months old, Natasha has full movement in her neck and her flat spot is virtually gone. The doctors at the hospital tell us that it looks better than a lot of babies that don't even have plagiocephaly so it is VERY minor. It will probably be gone completely by the time she is 1 year old.

So, this is our story. We are convinced that it was because of the Chiropractor and our persistent repositioning (see end of post) that helped Natasha's torticollis & plagiocephaly (not the physio because it tooks us WAY too long to get in there to see anyone). Don't get me wrong, physiotherapy is great if you can get in early enough to see them. I understand that Chiropractors aren't for everyone but it worked for our daughter.

Here are some tips on repositioning (most of them we still do and will probably do until she is 1-year old). Keep in mind that Natasha's flat spot was on her left hand side:
- we always put toys on her right side so she had to look to the right
- when we fed her her bottle we held her on our left side so when she looked towards us, she had to look to the right
- when we carried her, we carried her on our right side so when she looked outwards, she was facing right
- when we placed both girls beside each other, Natasha was always on the left side of her sister so she had to turn her head to the right to see her
- her highchair is on the right side so when she is being fed, she has to turn her head to the right
- her carseat is behind the driver so when she looks out the window, she is facing right
- wherever we are, wherever we go, Natasha always ends up on the right hand side so she has to turn towards the right to see anything (us, her sister, the outside world etc).

I hope our story can be useful to someone.

Sorry so long!

 

Thank you so much for sharing that! I am sure you will be helping many that are in the same situation! We are actually planning on creating a Twin Wiki page on Plagio, and I would love to link your story to it!

 

Yay for you for going to see a chiropractor... I swear by it! All of my kids have had adjustments and it totally helps with their immune system and their general wellbeing. My DD1 also has a bump in her skull that has reduced in size because of my chiropractor. I am glad that things worked out well for you!

 

Yes, my PT told me it was very important to approach or position everything so the baby has to turn to whatever side is tight. It has been a big part of helping my son's torticollis. It is also important to make sure babies get equal pressure put on all areas of its head by changing its position frequently from birth, which is something the PTs I see are really trying to get into the maternity wards and pedi's offices to help prevent the plagio from even being an issue.

Thanks for sharing!

Alyson

 

my dd (now 4.5 yo) had torticollis, diagnosed at 5 weeks. bottom line, she had 12 sessions of physical therapy and was cured. but through that, i learned that i should have been giving her tummy time from the beginning. i also watched the PT play with her and learned that the way we played with her could supplement the PT. its amazing what you don't know as a first time parent! i hope the PTs are able to get the word out in maternity wards and pediatrician offices.

 

Thank you so much for sharing. Both of my boys have some plagiocephaly, in the exact same spot. I am trying to repositoin and have an appt with a neurosurgeon in a few weeks. My daughter had some slight torticullus issues as well, but did outgrow. I need to work more with the boys to get them off that right side, so your suggestions are very helpful!

 

Hi...thank you so much for sharing!
We recently went to our local head shaping clinic, and we found out that one of our boys qualifies for a helmet (good & bad, I guess). He has moderate plagiocephaly. He was also just diagnosed with torticollis, although we strongly suspected it since about two weeks of age.
At about 3.5 months we saw a chiropractor for both our boys (they are almost 5 months now). Our other boy now turns his neck both ways, but has unfortunately developed moderate brachycephaly - he does not qualify for helmet treatment.
We have never been referred to a physiotherapist, but I have scheduled an appt anyways...he needs help.

My question after all this ramble is, where in Canada do you live? I would love to find a chiropractor who specializes in torticollis and plagiocephaly...really wanting to avoid the helmet!

Thanks so much...your story gives us so much help!

Kelli

 

Thanks for sharing your story - one of my girls has left torticollis and plagiocephaly and was referred to the physio dept at the Children's Hospital a couple of months ago. She has since been to two physio appointments and at the second one there was significant improvement of the flat spot and her neck mobility. We have a third appointment at the end of January and I hope there has been further improvement! We try to keep all the interesting stuff on her left and you have suggested a few more things we could be doing (i.e. positioning of carseat). I also agree with Tammy in that tummy time is essential - it can be tough though because of course she doesn't like tummy time too much! I do it in short sessions (physiotherapist said that was fine) and also found she likes lying on my chest on her tummy better than just lying on an activity mat. I had never considered taking her to a chiropractor but I may do if the physio exercises and positioning don't take care of the problem. So thanks again for sharing your success story - I am glad to hear that everything worked out for your LO!

Just wanted to add - Ava was head down the entire pregnancy too and was very low in my pelvis. I noticed that your daughter was also head down. I guess that must have been a contributing factor in developing the torticollis? I didn't notice any flattening of her head when she was born either but her head was definitely more cone-shaped than her sister's. It has since reshaped quite a bit. What was your daughter's head shape like?

 

I'm so glad you see improvement. We took the babies to a chiro for nursing latch problems (possibly a tiny bit of torticollis since latching on one side was a much bigger problem than the other) and with some gentle work on them she had me nursing without pain for the first time in three weeks. It was astounding. My husband pooh-poohs chiro care as witch doctory - he watched her do what looked like nothing but hold the babies and saw the amazing results right after - now he's a believer.

 

Because my oldest was also completely healed by a Chiropractor, all my babies go and see one in their first week of life. Positions in the womb and birth both naturally and by c-section can be hard on a little one's neck and spine. The adjustments that my Chiropractor does sound just like what you mentioned. I had one baby that had to see one for 9 months. Thanks for sharing your story. I know not everyone agrees with Chiropractic care, but maybe someone will read your story and give it a try.