Torticollis, Tongue Ties, and Therapy — A Mom’s Point of View
My son was born with in utero torticollis. This means that due to his position in my pelvis his neck muscles (sternocleidomastoid, scalenes, and upper trapezius muscles) were tight. When he was born, the head tilt was noticeable and he had a flat right side of his head. My family noticed it, the hospital, however, did not. His pediatrician did not notice it either. I sometimes wonder what would have happened if we didn’t take notice? Why didn’t the hospital or doctors notice? (That’s a whole other can of worms). We started, at birth, to work on him. We started doing sidelying stretches, head rotation, positioning on his stomach, eye exercises, leg exercises, trunk exercises, etc.
At 4 months we took him to see a physical therapist to get a second opinion. I am a physical therapist and my mother is a pediatric physical therapist assistant, however, we wanted another opinion. It was at that evaluation that he finally received his official torticollis diagnosis, 4 months later. Also, during this evaluation, his right shoulder was more closely evaluation. He was also born with right shoulder dystocia, and due to that, had been avoiding weight bearing on the right shoulder during tummy time. I alway knew something was wrong because his birth was so traumatic but was always set back when healthcare providers told me “everything was fine”. The “everything is fine” phrase compelled me to write this post.
Trust your gut. YOU are the Mom and YOU know your baby. TRUST YOUR GUT. Even though there may be a set or trained eyes on your baby, only you know the truth. So, here are my thoughts, cliff notes style, as to what I think up until now on how to recognize torticollis and some tips/tricks I learned about the diagnosis along the way.
1. Don’t accept what the hospital, doctor’s or clinicians may say if you have another opinion. If you notice that your baby has a flat head, or the side of the head is flat, you should address that issue right away, regardless of what a doctor may tell you.
2. Look for gaze and looking preferences — if you notice that your baby always looks to one side or always has head to one side, your baby should be evaluated. Does one eye lid seem to droop? If a doctor says they are “fine” but you notice a difference from right to left get another opinion.
3. Look for a Tongue Tie or a Lip Tie — My son’s lip and tongue was missed by the hospital, the pediatrician, and every therapist he saw. I ended up diagnosing him and sending a picture off via email to a pediatric dentist. He had the revision done with a cold laser, exercises every 4 hours for the next 3 weeks. He now looks great. Look in your child’s mouth. Pick up their top lip — can you flip it up all the way? Is there a long fleshy piece coming down into their gums? Check their tongue — Can you roll the tongue back in their mouth? is there a band under the tongue that gets stuck? Check their cheeks — run your clean finger in their cheeks — does it get stuck? I have noticed that tongue ties and lip ties seem to go hand in hand with torticollis.
4. Check their vision — A lot of optometrists still won’t see children until 3 years of age, which to me, is an outdated policy. Children, especially with a diagnosis should have their vision checked by an optometrist. My son had a “tight left side” and, due to that, his left eye would turn inward at times. We started doing left lateral eye tracking activities with him in the high chair. Placed toys on the left side of him and moved them up/down all around.
5. Check their legs/feet- Does one leg always seem to stick out straight compared to the other? Does one foot point in a certain direction? The legs/hips and feet will be affected with torticollis.
6. Breastfeed — DO BOTH SIDES. Even if the baby doesn’t like it, it will help them develop more symmetrical strength, eye gaze, and prevent the torticollis side from always being shortened.
7. Tummy Time — I may get in trouble for this. I placed my baby on his stomach to sleep during the day. “Back to Sleep” for every sleep doesn’t make logical sense to me. I’m sorry, but it just doesn’t. I believe a baby needs to sleep in all different positions for digestion, sensory input, etc. I placed my son on his stomach because he had a flat spot on the back right side of his head. Before you freak out. YES stomach to sleep during the day with the use of baby monitor. During his wake hours, he was on his stomach, side lying or holding him. We were able to completely get rid of his flat spot without the use of helmet. We used massage, MFR, and proper positioning. After about 8 months of that his head was completely round.
8. Crawling — encourage your baby to crawl. Avoid the use of “jumpers” and “walkers”. A child should not jump or walk with assist until their hips are fully developed. A child progresses from tummy to all fours to standing briefly to taking small steps to walking then to jumping. This natural progression gives the hips time to properly sit into the socket. Introducing jumping before the hips are ready can cause issues. Avoid “containers” (car seats, swings, etc). Use a car seat while in the car (DUH), however, limit the time the baby is in a car seat out of the car and avoid taking long trips. Place the baby on his/her stomach as much as possible and help them bend their legs up.
9. Black and White — babies love black and white patterns — place them all around, in the car, in the crib, on the wall. This will encourage the neck muscles to strengthen.
10. Exercise your baby daily — Babies love movement — to be rolled around, bring their knees to their chest gently, move them.
11. Ditch the pacifier — pacifier use does not help with torticollis — teach your baby to self sooth instead.
12. Speech — torticollis can delay speech. Get a speech therapist and start talking with your baby. Avoid screen time all together. Screen time can and will impact the visual development of the eye.(phone, TV, Ipad).
13. Baby Led Weaning (BLW) — Starting at 6 months feed your baby REAL food. No need to buy baby food, just make your own! Giving your baby real food is not only healthier, but it also provides your baby with more sensory feedback from different textures etc. I started with a baked sweet potato and a mushed banana followed with breastmilk. He loved it.
My little boy, now 16 months, is a little warrior. It has been a lot of work so far and we still have more to go. We work with him daily doing all different types of exercises for his neck, lip, eyes, core strength, speech, etc. His nickname is “strong bear” because he has had so many challenges so far and has just been able to push through all of them.
I’ve attached some photos of his progress. Notice his cute little cheeks :) .If you are a parent that has any questions/comments/stories about your baby, please don’t hesitate to reach out to me. Would love to hear from you.