Mom's with experience with Torticollis? (Also on August '12 board)

erjarv

I was hoping to hear from other parents/moms who have experience with torticollis? My LO was diagnosed with it at about 1 month, and has been going to PT since 8 weeks. He's now 5 1/2 months and while it has improved significantly, he's still tilting his head to the left just a few degrees. His therapist has been on the verge of dismissing him a couple different times, but doesn't want to when he's still keeping his head tilted (which I agree with). 

 I'm getting very frustrated! It's not so much about his muscles being tight anymore. He does the stretches relatively easily and can rotate/tilt his head in the opposite direction when he's laying down on his own easily. When he's sitting up and having to support the weight of his own head however, he can't seem to straighten it on his own. It's only tilted a little bit, but it's definitely noticeable even to people who don't know him. I know that at this point it's just about strengthening the muscles on his right side so they can keep his head straight, but it's been at this point for months now and the strengthening exercise the PT gave us doesn't really seem to make a difference.

 Any advice? Has anyone else had this problem? How long did it take for your LO to straighten out?  

stanfordt04

My LO was diagnosed with torticollis at one month as well... I am REALLY surprised that your Physical Therapist is on the verge of dismissing him... especially since he still has the tilt going on. 

 the tilt is the hardest thing to fix in my opinion and will take the most time. every time DS has a growth spurt, the tilt comes back rearing its ugly face. also, my PT told me that you really want to focus on the tilt because they get use to seeing everything tilted... this could be why he does it often...there are SO many reasons why he is tilting which is why i am glad your PT is staying with him. 

My LO's torticollis is getting much better. he is gaining full rotation on both sides but the tilt definitely has better days than others. my PT is planning on staying with us until he is walking. She wants to make sure he uses both sides of his body equally through all of his milestones. 

Hang in there. Torticollis is the PITS... but i keep hearing there is a light at the end of this tunnel. 

mamatotwins0812

One of my twins had it also. Are they having you do exercises at home too? That was what seemed to help LO the most. The pt did tell me that growth and major milestones can bring it back as pp said, so that could be part of what's going on. I think babies inevitably favor 1 side but it def sounds like he's still working on his strength. Thankfully my guy grew out of it very quickly. I was very diligent on getting him on his tummy, in the exercauser and doing the exercises, all to strengthen those muscles. Keep up the good work, you'll get there! Good luck. 

wither16

I agree with PP- I would fight to keep him in PT.  We have been in PT for several months for our Tort and Plagio helmet.

  I don't know what the set up is where you are going, but my DS is seen by both the PT dept and also the "Rehab" dept Drs.  The rehab Dr evaluates him every so often and increase/decreases/makes any changes to his PT- after reviewing the PT notes.  So IMO the PT should not be making that call.

Good luck with everything!  Tort sucks....

Idahomama

DS was diagnosed at 2 months.  We see a cranio therapist for the flat spot and a pt for the torticollis.  Both areas seem to have greatly improved so far.  Again like PPs he tightens up again around growth spurts.  

I think one our best strength building exercises that helped was having him is on my lap stratling my leg.  Then I hold him at about mid to low tummy and tilt him side to side so he has to tilt the opposite way.  We started holding higher up and now we hold below belly button.  Just a suggestion I case you don't do that one.