Wednesday Windows: Torticollis

I mentioned on Monday that my daughter now has physical therapy for her torticollis.  This has been a concern of ours since almost day one.  For the longest time I thought that I didn’t know how to put my child in a car seat, carrier, swing, bouncer chair, etc.  She would always have her head to the side or at an almost 90* angle to her shoulders!  I would try to line her up as best I could when I took pictures or only take pictures that didn’t show it.  I thought I was a second time mom and should know what I was doing.  And well, this time, I didn’t know what I was doing.

At her 1 month appointment her pediatrician, that I love, asked me about the tilt.  I didn’t really say much.  She mentioned that it might be wry neck (another term for torticollis).  That we should keep an eye on it and talk with her about it if we think we need help.  I then went home after that appointment and looked up what she was talking about.  In a way I felt extremely relieved since it was not a bad mom badge.  At the same time I was worried about what this meant for Sydney.  She was already born with the cord around her neck three times, wasn’t that enough for her to go through?

I asked questions online and did a lot of research.  I had about 8 weeks left at home with her.  I wanted to know what else I could do to help her.  I was told about a site called Torticollis Kids by an online friend that is a physical therapist.  There was some really helpful information on there.  It at least helped me to see that I was not alone.  That I didn’t do something wrong to do this to my baby.  I was just so worried that it was my fault and it wasn’t.

The process we went through to get her help was a long one.  I am going to do it as a list just to show you everything we went through.  I wish I could remember the dates, but I can’t!  The ones I can I will note.

  • Her pediatrician faxed in her referral to the Infant and Toddler Connection at Sydney’s 2 month check up. This was around a week before Thanksgiving.
  • Played phone tag for a while to get the initial talk/assessment done.
  • We had the first visit that was just mainly questions for me.
  • A review board met and decided that she did qualify for help.
  • We set up another meeting with one of the directory and two developmental specialists.
  • The three of them met with Sydney and me.  They tested her to see where she was at and we came up with a plan.
  • The plan and evaluation was mailed to me and I was given a new coordinator and a physical therapist to meet with.
  • February 14th was our first physical therapy session and meeting with the new coordinator.

The therapy session was wonderful!  Sydney was sleepy and so it took some time to get through everything.  Her physical therapist was wonderful though.  She talked to me on my level and didn’t make me feel stupid.  She showed me several things that I can do with Sydney to help her get over this little hurdle.  I will have to take some pictures to show me doing some of the exercises with Sydney.  They are fun and will help me build arm strength too!  She explained to me that it is all about the work that we do with Sydney rather than what she does.  She will meet with Sydney every other week.  And we will alternate between home and daycare.  Therefore she will be able to show daycare things they can do and she will be able to show me things I can do to help her.

I am so thankful that everyone is so willing to help.  Daycare keeps asking me about it all every step of the way.  I am very pleased that they are showing so much interest.  That is really going to help Sydney to develop developmentally the way she should!  All I still need to do is write a note saying that the physical therapist can come in and work with her.  I really think they are going to work well together.

With torticollis it is all about early intervention.  If you suspect your child is delayed in any shape or form, talk to their pediatrician.  You can get help.  Everything is based on need.  And don’t worry about payments.  There are sliding scales for most things, even if you don’t have insurance.  We are still not 100% sure what we will be paying out of pocket.  The most it will be is a co-pay though.  And a few co-pays now beats what delays it could cause her if we did nothing.