Torticollis and hypotonia

[mopac]

I would like to solicit some advice about my son's torticollis: He is 5 month old now, and since he was born his head is tilting to one side, mainly the right. After we took him to PT, his head was straight for like a month, then tilting again.

My son is also delayed in his gross motor skills. He has poor trunk control. He has PT once a week, but  his progress is very unsteady he loses all the developmental achievements when the torticollis is back. I am at a loss.

If you have any advice or idea, please let me know. Please share your stories with me.

Thanks!

[KimPM]

With the torticollis exercises, they should be showing you how to do them so you can do them at home. You need to do that several-times-daily stretching to get the job done. It just can't be done at a once a week or few times a week PT session.

My DS had torticollis, and I stretched him daily for months. Today you wouldn't know he had that problem.

[mopac]

Hi, we stopped doing the (daily) stretching, because he started tilting to the other side. So you did the exercises long after the torticollis was gone?

[KimPM]

You should continue stretching. Stretch both sides, but do more on the side that's the problem. My PT said that kids with torticollis tend to stiffen up and need continuing stretching over the years. But I did lots of stretching for maybe 3-4 months. (He started at around 3 months old.) Then I did the stretching less often, but still did it regularly for the rest of the first year. After that, no problems at all. We don't do any more stretching now, and I don't see him tightening up. He's almost 6 years old.

I also took him to about 5 craniosacral therapy appointments when I first started doing PT with him. I think that helped to align things in a synergistic way with the PT stretching. But you can do the PT without the CST if you want to.

I also tried positioning him in his highchair with rolled towels on the lower side of his neck, so he would sit without leaning his head over. I also positioned him at night sleeping on the side he was leaning toward, so his neck would be straighter. He slept next to me, so I felt it was safe for us.

I think if you catch it early enough and do it regularly enough, it can be corrected. The longer it goes without stretching treatment, it's not good. It's important to catch it before he starts to sit and walk, as his balance, walking, and vision can be altered by the crooked position.