My Kian has torticollis. :(

mrsladd · May 2009

I've suspected this for a few weeks now, and today I got confirmation at his 2 month appt. To my dismay, I was also right that he has a curvy spine, and facial distortion (I've thought his face seemed slightly fuller on one side than the other since birth, and I've been worried about his spine for the last week or two). For those who don't know, torticollis is a condition where the muscle on one side of the neck is tight and shortened, resulting in the head being nearly always turned and cocked to one side. It seems to possibly be from the baby's position in the womb, especially for big babies, which makes perfect sense to me, since Kian was 9lbs 14oz and I could feel his head pressing down HARD from the moment he turned.

We saw the physical therapist, and once she started evaluating him it was almost shocking how obvious all of these things were, from the flat spot on his head to his little c shaped body. She also said one of his eyes is smaller looking, due to the socket being pushed out of proper position.

The good news is that the cause of all of this is muscular, and therefore all fixable. We need to do pysical therapy exercises all day long throughout the day, and we have physical therapy appts twice a week scheduled through the end of July, for starters.

I'm nervous right now because I'm not sure I've got the exercises right, and of course I've already been consumed with the worry of balancing my time between the baby and my toddler, not to mention I'm still nursing, bottle feeding and pumping (that alone has been draining all of my time, so the thought of adding this pt and going to these appts is daunting). I feel a little sad, but I'm glad that in the big picture this is a minor thing.

summerbridesara · May 2009

I'm glad everything is fixable!

It sounds like you're going to be busy for the next few months, but it will all be worth it! (((hugs)))

Skatcat · May 2009

My Hope has the same thing...my nanny noticed it from the get go and pointed it out to me. It's slight but there were certain things that even we noticed, like the fact that she always wanted to turn her head to the right. Don't worry, its completely :"fixable." We do some exercises with her (which she HATES) but it really helps. Also, for sleeping, we poured some dried beans into a tube sock and use that to position her head straight. THAT has made a huge difference, even more so than the exercises.

ocean71506 · May 2009

I am so glad it is fixable! It will be tough but you can do it. I often wonder if Emma has this. I guess I will find out next week.

ourlittlebean · May 2009

i'm sorry ?it's hard to hear things like that about your precious LO. ?

my DS has/had torticollis. ?we did the at home stretches, etc etc. ?and he is now a fantastic 10mo baby! ?

?hang in there. ?you WILL be able to do it all. ?somehow us mommas always find a way.

?

hugs?

?

TayLynn · May 2009

((hugs)) It will all work out. It's great that you caught it this early. Some babies don't get treated for it until they are almost 5 months!

Andrew was DX with torticollis at 2 months also. He had limited range of motion and a small flat spot on the one side of his head. Things improved rapidly. We don't have to do the stretches as often now and he doesn't cry when I do them. The early weeks were tough though when Andrew would turn bright red and scream.

We've turned it into a game. I get very close to his face and smile while counting to 10 in my happiest voice. At 10 I touch his nose and most days he giggles.

Have them teach you the lateral carry so you get some stretches in when he doesn't notice it.

Oh, and Andrew was a little curvy spined too. As his core muscles have gotten stronger, he's doing much better. He has full range of motion and is sitting on his own for brief periods.

Just remember it won't always be this difficult or this intensive with the stretches.

If you ever want to email me, TayLynnP AT gmail DOT com

847Christine · May 2009

I'm sorry you have so much on your plate! You're a strong mama & I am sure you'll do great w/the exercises.

{hug}

FredsNey · May 2009

I'm sorry..... DD had mild torticollis but it resolved with OT and daily exercises and stretches. The stretching always made me nervous, but I must have been doing it sufficiently enough because she started to improve pretty quickly. I hope Kian improves quickly. ::hugs::

justgnat · May 2009

=( There are 2 babies in my mommy &me class that have it. the 6 mos old is just about recovered. the 8 mos old has a helmet she has to wear for 6 mos. good luck! I'm sure he'll be fine!

cloud9climber · May 2009

That is a lot to deal with. ?Be brave Mrs. Ladd - you can do it!!! ?He is lucky to have you as a Mom

moniquitta · May 2009

MrsLadd... it will be fine... My ex-fiance/ex-dancpartner had this very very badly at birth. His head was literally on his shoulder and did not get better w/ time... they ended up removing that muscle. He has led a comopletely normal life... you would never tell that he has had that muscle removed.. in fact, him and I were US finalists in ballroom dancing (where you need to keep your head nice and straight). So even in my ex's worst case scenario (which yours is not even clos) he has lead a normal if not more then normal life. Hugs to you though because I know it can be stressful.

SuzP · May 2009

You have got so much going on. I am so sorry about the torticollis diagnosis. DS had it confirmed at two months, and we went through four months of pt and home stretches. It was so hard for me to do the stretches because I was afraid I was hurting him. But he's now almost four and doesn't have any sign of any issue with it. I hope Kian's therapy is short lived for you.

Katebug421 · May 2009

My daughter has hip dysplasia and torticollis. She was diagnosed with the torticollis at 5 weeks old. I got her PT through out Early Intervention program. The therapist comes to the house 2x a week and works on stretches as well as milestones. Rolling was and continues to be rough for her (even though her neck has straightened out). She can now roll belly to back, but not back to belly - even though she started sitting this week. Some of the advantages to EI is that the therapist comes to your house, and that the IFSP (the document that grants service) lasts for 6 months, so even if the toricollis begins to look better, the PT continues to help work on milestones. Its also free of charge. I am an EI teacher. If you have any questions, please feel free to email me at Katie421 at gmail dot com.

ncsubride · May 2009

Big hugs! Ben started PT yesterday for some gross motor delays and the PT also diagnosed Ben with torticollis. Ben doesn't have the head tilt but she said that the muscle was too tight and whatnot. She was going to get a prescription from our doctor and then when we go for our weekly appointment next week she will show us the exercises and other things to do with him. I know how stressful you feel bc I have Kate as well and she is so high maitenance. It never ends does it?

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