4.21.2015

Jolie's Journey | Torticollis Update

Read about Jolie's Journey from the start HERE
recently had some questions asked about Jolie's torticollis and realized that after I shared our 'journey', if you will, with Jolie from months two to ten, I never gave an update as to how it all has come together, what steps we took to continue to work through this disorder she was born with and how its been since she was called 'cured'.  
A picture popped up on my TimeHop feed last week, and I shared it with my sweet friend Sarah, and while we both reminisced about them being so teeny the one thing we noticed pretty quickly was that baby's tilted neck, hiked shoulder, and very apparent struggle with torticollis.   
If you have followed this blog for some time, you know of our PT visits, the TOT collar, and the process that it was to overcome that tight neck of her's - but its clear now that she's got zero issues whatsoever, and her daddy and me are ever so grateful.  
We started at 2 months with PT for Jolie and went consistently until she was 10 months.
Can we just talk about how LITTLE she was?  This was her very first visit to therapy.  
Time goes so quick.  I tried my best not to blink.
We made it through 8 months of bi-weekly, weekly, bi-monthly.. and then finally monthly trips to physical therapy when we were released after her final visit.  At that time she was 'cured' but remained with a pretty pronounced tilt, especially when she was tired, upset, or sleeping in her carseat.  She would revert back to her comfort level and often times hike her shoulder up to compensate for the tilt she continued to have.  At this point (10 months old) we were still stretching her many times a day, and continued to do the exercises we learned in PT, but she wasn't ever very tight anymore (the first stretch in the morning was usually pretty tight, but the rest of the day she was fairly flexible) and the tilt was more of a habit than lack of mobility. We asked about options for correcting the tilt, and our PT talked about the 'tot collar'.
10 months // hiked shoulder + head tilt  
While our amazing therapist did everything she could to assist us, the eager parents, in educating ourselves and working with Jolie on a routine basis, she explained there want much left she could do with her in therapy or we could do with stretching to correct the tilt- and it might just be a 'Jolie thing'.  We understood, but we were not okay with her having a tilt for the rest of her life (surgery will not fix it.. for Jolie is was a habit and laziness because she was 100% mobile and her range of motion was excellent), so we ordered the tot collar when she was 10 months old.  
To be completely honest- I was VERY against the tot collar.  I was tired of appointments, stretching  exercises and worrying about her lack of desire to hold her head up straight.  I was tired of messing with a sleeping Jolie - arranging her so that the way she laid in her crib or slept in her carseat didn't exacerbate the tort more than it already was.
I was done with all of it.  
I think we were both exhausted from dealing with it. But, Jordan persisted after reading and reading and learning more about the effects of long-term, untreated tilt/torticollis - we were not going to let this slide by as a 'Jolie thing'  
10 months // hiked shoulder
10 months // side slouch + hiked shoulder
We started the tot collar at 10 months wearing it 5-6 times a day for 30-45 minutes at a time.  Some friends and family were confused as to how often she was to wear the collar - and it isn't at all like a helmet, and we could put it on as often or as little as we like.  She usually wore it while we were at home - but occasionally if we were out running errands we would always have it with us.  
We did continue to stretch her about once a day in the morning just after she woke when she was the most tight.  After her first year we didn't feel the need to stretch her at all, but continued therapy with the tot collar several times a day.
After 4 months of consistent wear, we finally decided it was time to move on from the collar.

This picture remains one of my proudest moments.  It may seem so silly, but for the entire year we worked with her there were so many says when I thought we were seeing results and progress and out work with Jolie's tort was paying off.. and then she'd revert, regress, and fall into her habits of tilting her neck.  The moment I realized what I was looking at in this picture- I sent it to Jo's therapist with proud mom words of thanks for all her help.
NOW, nearly a year to the day of her last wear of the tot collar, we have zero issues with tort or struggle with a tilt at all whatsoever.  Jordan and I truly believe that the tot collar resolved the issue of the tilt completely and we are really glad we opted for her to wear it.  The collar isn't something you have to get through your doctor or physical therapist, but if you are interested in using something like this, I would 100% recommended having fitted at the PT or chiropractor's office.  It can be really confusing if you don't know what you are looking at or how to fit it.. I remember opening the box and looking hard with a ruffled brow at the tubing and straps- but after we took it to our physical therapist's office and she fit it to Jolie's neck it all came together for me.
While this tilt we battled is common and most often associated with torticollis, it is correctable, without surgery, and completely non-invasive.  
The tot collar is optional and not a required thing (like the helmet), but I would seriously suggest and recommend the tot collar if you are going through an experience similar and have questions.  After being left with little option for Jolie after her release from therapy with this continued shoulder hike and tilt to her weak side, I don't think it is something that a toddler will grow out of, but that's just my opinion:)  
So thankful for this little girl.  She has been a soldier from day one in the womb, and I am proud to say, once again, we have overcome.

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4 comments:

Julie S said...

Ooh I hadn't heard of the Tot collar, but that's a great idea really. Baby H has torticollis too and we've been taking him to physical therapy also. On top of that he had to get the Doc Band (aka "helmet") due to his asymmetric head shape. I think now that he can hold his head up, the torticollis is resolved, but it is good to know that we have options in case we continue to see the tilt.

Ashley D said...

I love seeing these sweet pics of baby Jo.. She melts me!

malgorzata pękala said...

My son has torticollis. He's 10 months. I have tot collar 2 days. He is crying with this on his neck :-( I use also simple collar, I think it works very similar. We started therapy when he was 3 weeks old. Sometimes I feel that is so mach behind me and it's almost ok, but sometimes...it's totally bad :-( Sorry for my english. Very nice to see your daughter so beautyfull after 1 year therapy :-)

malgorzata pękala said...

My son has torticollis. He's 10 months. I have tot collar 2 days. He is crying with this on his neck :-( I use also simple collar, I think it works very similar. We started therapy when he was 3 weeks old. Sometimes I feel that is so mach behind me and it's almost ok, but sometimes...it's totally bad :-( Sorry for my english. Very nice to see your daughter so beautyfull after 1 year therapy :-)

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