Torticollis

girllennon · March 2011

Hi. I mainly lurk over on this board, but I need some guidance. My 3 month old son was diagnosed yesterday with torticollis (I knew he had it as early as one month, but wasn't certain that was the case at the time) and I am trying to find a physical therapy facility that deals with infants with this condition and takes Coventry Commerical POS Open Access insurance.

So far, my pediatrician, Amy Relkin, reffered me to Kids S.P.O.T. but they have no opening in the immediate future to evaluate my son. I was given another number for Kids Therapy Works, but they do not take my insurance. I was given a PT list by our insurance provider but not many people have returned my calls to let me know if they work with infants.

I was only able to get a hold of one place called Little Steps Rehabilitation Clinic in Nort Miami Beach, but they told me they would call me back to schedule an appointment AFTER they verify if this is covered by our insurance. I have no idea when I will, or if ever, get a call back.

I am just beside myself with frustration because time wasted playing phone tag is time wasted getting the help my son needs to correct this issue. I do look forward to hearing from other moms dealing with this. My DH is downplaying our son's condition and thinks we can 'wait it out'.

MellyMelB · March 2011

Hey there. A fellow bumpie had to deal with this when her son (now 3) was your son's age. He is perfectly fine now but I can tell you that early intervention and NOT ignoring it helped a lot. Waiting it out makes it worst. I am going to see if I can have her contact you through here.

FSUSammy · March 2011

Thanks for sending me an email about this post Mel!

I haven't posted here in ages but I'm the bumpie Mel told you about. My son Mikey had torticollis since birth. I noticed it when he was about a month old because he refused to turn his head the other direction no matter how much I tried to get him to face the other way. I was referred to a specialist in Weston (Dr. Stelnicki 954-983-1899). He sent us to physical therapy at Memorial West. I took my son to PT for about a year. The torticollis caused him to be delayed on a lot of his milestones like rolling, sitting, crawling, and walking.

At one point I had to use a TOT collar on him to force him to straighten his neck out. We were REALLY close to needing either surgery or botox injections because he was being too stubborn but finally it all worked out.

Mikey is now 3 years old and has no signs at all of ever having had torticollis. Early intervention is KEY. You can see his entire torticollis journey on his blog https://wwww.michaelzullo.com

TayLynn · March 2011

My son had torticollis at birth also. We took him in for PT at 9 weeks and he was done with therapy by 6 months. We went to Kid's SPOT.

We noticed that my son preferred to look to the left or straight on with a head tilt. He could turn his head to the right but not very far. He definitely didn't have full range of motion to the right.

You really can't wait it out. It will only get worse. If he persists in keeping his head certain way, then it's possible he'll develop a flat spot on the back of his head. If the flat spot gets too severe, then it will affect his face development. His ears and eyes can get out of alignment with each other. This could require one of the helmets that have to be worn most of the day to fix it.

I can see the slight torticollis head tilt in your siggie picture. Does he often hold his head that way?

I didn't notice the head tilt so much at the time when my son had it. But when I look back at pictures, it' really stands out.

In the meantime until you start therapy, you can encourage him to do lots of tummy time and get him to look more to the side he doesn't use as much. Put toys on that side etc. Try not to leave him for very long in swings and bouncers.

Those things are not going to replace PT. He really needs the stretching exercises to loosen up the neck muscles.

My son's neck was so tight the the skin was adhering to itself on that side. I never even realized it until we took him for the first eval. He also had a slight flat spot that filled back in pretty quick because we started therapy so early. They kept checking his ears to make sure they were leveling out.

GL and please don't wait it out.

girllennon · March 2011

TayLynn:

My son had torticollis at birth also. We took him in for PT at 9 weeks and he was done with therapy by 6 months. We went to Kid's SPOT.

We noticed that my son preferred to look to the left or straight on with a head tilt. He could turn his head to the right but not very far. He definitely didn't have full range of motion to the right.

You really can't wait it out. It will only get worse. If he persists in keeping his head certain way, then it's possible he'll develop a flat spot on the back of his head. If the flat spot gets too severe, then it will affect his face development. His ears and eyes can get out of alignment with each other. This could require one of the helmets that have to be worn most of the day to fix it.

I can see the slight torticollis head tilt in your siggie picture. Does he often hold his head that way?

I didn't notice the head tilt so much at the time when my son had it. But when I look back at pictures, it' really stands out.

In the meantime until you start therapy, you can encourage him to do lots of tummy time and get him to look more to the side he doesn't use as much. Put toys on that side etc. Try not to leave him for very long in swings and bouncers.

Those things are not going to replace PT. He really needs the stretching exercises to loosen up the neck muscles.

My son's neck was so tight the the skin was adhering to itself on that side. I never even realized it until we took him for the first eval. He also had a slight flat spot that filled back in pretty quick because we started therapy so early. They kept checking his ears to make sure they were leveling out.

GL and please don't wait it out.

I can't update my siggy pic to show how he looks now, but he does hold his head like that most of the time. He does move his head from side to side a lot now because he has always been a very alert baby, but he prefers his left side. I am hoping that the PT will help him b/c his head shape has changed a bit since I took that 1 month pic.

Luckily, I finally found a place that will take him in Hialeah. It's way the hell out of my way, but I will go anywhere to get him help. I am not waiting it out (although my DH thinks there isn't an issue) and we're fighting about it, but I don't care what he thinks. Our son needs to correct this issue now and if my DH is pissed off with me for now, than so be it.

I want to thank you ladies for responding. There's not too many torti moms on these boards, so it's hard to find the support you need to get through this.

TayLynn · March 2011

That sounds a lot like Andrew. He could turn his head but it wasn't the full range of motion. The PT will help and the earlier that you start, the quicker that it will start to get better.

Once you go to PT a few times, you should be able to do the stretches on your own more. So that may cut down the trips down there. Also keep trying to find a place closer that has an opening.

I'm sorry your DH doesn't get it. Is there any way he can go with you to PT once?

My PT demonstrated my son's limited range of motion and I was able to duplicate that at home for my husband to see the difference in the sides. Maybe they can do that for you. GL!

If you ever have any questions or want to vent, feel free to email me.

taylynnp AT gmail DOT com

kristinem17 · March 2011

Hello, I see you are in Pompano area. My son had torticollis and we went to a great PT place that is a part of West Boca Medical Center - we live in Coconut Creek. This place would be MUCH closer to you than going all the way south to Hialeah. It's West Boca Pediatric Physical Therapy, on Glades Rd. There number is 561-470-5437 and the receptionist there is Jackie. She is super helpful and is the one who verifies insurance. She would call right away for you to see if they can work with you or not. My son was seen there weekly from 5 months of age until 10 months of age, when it was cut back to just every other week. When he turned 1 both the PT and his Ortho at Joe DiMaggio determined he didn't require further treatment.

girllennon · April 2011

Thanks for the info! I will updated everyone by Monday on Joseph's evaluation.

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