XP: Torticollis Moms, a few questions.

dragonflyinn

I have posted about this before, so sorry if some of it is a repeat.  We were told that S had torticollis after bringing his head tilt up with the pedi several times.  The pedi blew us off and said that it was mild and we didn't even have to do stretches (this was around 8 weeks old) then we saw his partner one day while he was out of town and the partner recommended an opthamologist to see if his eyes were misaligned as he didn't think it was torticollis because S has full range of motion.  Went to the optho and no misalignment.  I saw a third dr who said he did think it was torticollis, so I continued to stretch at home.

Well, when we had our follow up with the opthomologist he said that we should see an orthopedic surgeon regarding the head tilt, so I have scheduled that appt.  I am just frustrated because I have tried so hard to advocate for S and be sure that he is getting the attention he needs but I seem to never be able to get answers.  He also has much poorer head control than he should have (even at his adjusted age).  I have the orthopedic surgeon appt on Tuesday, but the more I think of everything, the more I worry. 
S truly does not have nor has he ever had a restricted range of motion so now I am wondering if the one dr was right, which begs the question, what is causing the head tilt???? It scares the heck out of me to let my mind wander so I really need Tuesday to get here.

Anyway, my question is, if your child had torticollis did they have a restricted range of motion.  He definitely favors one side but CAN turn to both sides.  When we stretch one side is stiffer, but we are still able to turn the head both ways.  

If you could please explain how it was for your DC I would greatly appreciate it.

Thanks.

sunriz

My DD has torticollis. Our pedi acted the kind of the same way...saying that kids typically favor a side and just to move her head.  We tried that but eentually noticed that she would not cross midline.  I requested another appt and she was diagnosed and PT was recommended.  DD has been receiving PT weekly since July...her range of motion is better, turning about 70% to the left, but she continues to have tightness especially with tilting to the right.  We were told that kids with Torticollis have tightness in 2 areas...turning to the opposite side and tilting (ear to shoulder). I hope  that makes sense.   So for my DD...she favors her right side and tilts her head to the left.  So we have been working on stretching her neck bu turning her head to the left and tilting to the right.  This ia really good site that helped us - https://www.orthoseek.com/articles/congenmt.html  We also saw a Neurosurgeon...he agreed that she had tort. and she also has mod-severe plagiocephly (flat spot on her right side).  He recommended a helmet or repositioning therapy.

 I hope that all makes sense...Good luck!

preemieparent

I'm sorry you haven't been given very consistent answers.

Our son had torticollis on the left side.  When he was very young his head was tilted and he was much tighter on that side.   He did have a full range of motion including turning his head.   We saw a PT regularly and she helped us with stretches and other activities.   Eventually he basically "outgrew it" - I want to say around 14 months.   Personally I think seeing a surgeon is kind of drastic step.  Especially since it doesn't sound like you have been given the opportunity to receive regular therapy first.

Have you seen a PT?  I think they would be the best person to make a diagnosis on this type of issue.   If your doctor won't recommend one, call around and ask about a pediatric PT.   Find out if they will see you for free the first time as an evaluation.   

I hope that helps.

dragonflyinn

Thank you both for your comments and info. 

We have not been seen for PT because our regular pedi continues to blow us off and act as if there is no problem.  And the other two concerned dr's have both recommended either an orthopedic or neurosurgeon.  I guess that is part of the reason I am scared because I too agree that the step is drastic so I wonder, what are they thinking is causing the head tilt.  I suppose I will have some more answers on Tuesday.  I asked about PT and they said that the ortho surgeon will be able to make a recommendation for PT.  I just feel like I am going around and around in circles with this issue and am so frustrated.  We have the boys 6 month well baby check next week, and after that I am planning on finding a new pedi.  Hopefully I will get some answers, and I will keep you posted.

 

mhop

Campbell was never diagnosed with torticollis but she did favor turning her head to one side and had a head tilt.  She also struggled with head control.  We didn't wait for our laid-back pedi to address it.  Since C was already receiving early intervention, we asked for a PT evaluation.  She was evaluated and qualified so all we had to do was call the pedi and ask for him to write a prescription for the therapy.  I would suggest you contact EI and go ahead and get the ball rolling for PT.  Don't wait on your doctor.  It can take a while to get the eval done and it sounds like you're losing time already waiting on your drs to figure it out.  We have seen tremendous progress since starting PT.  I highly recommend it.

njkaren

My baby has not been diagnosed yet with torticollis but at our pediatrician appointment on Thursday the doctor commented that Brandon prefers turning his head to his right side and said that there is a little stiffness in his neck. He said that pt might need to come and do stretches. I immediately called early intervention when I got home and someone is supposed to get back to me this week about setting up an evaluation.