Torticollis Progress: Video Update

To change it up, I decided to do a video update on Kellyn's progress versus a regular blog post update.  In this video, she's almost ten months old and has been in physical therapy for approximately twelve weeks.  Watch the video below to see how she's progressing in physical therapy:

Consultation with Chiropractor

We recently had a consultation with a chiropractor who has experience working with babies and children.  She came highly recommended to us by our daughter's outpatient physical therapist.  My husband and I have been considering supplementing Kellyn's PT with chiropractic since we have heard a lot of positive feedback from other parents of babies with torticollis.

Gloria Rosazza © 123RF.com | glopphy

Torticollis Clinic Appointment

Today was our appointment at the Torticollis Clinic at Children's National Medical Center in Washington D.C.  We were excited to see medical professionals who specialize in the treatment of torticollis specifically. Of course, Kellyn's head tilt was super minimal today. I almost wished that she was having a "bad torticollis day" on the day of this appointment, so they could see her at her worst.

At the appointment, Kellyn was evaluated by a nurse practitioner and a physical therapist. The women put Kellyn in various positions and they had her demonstrate various motor skills.  After they were done working with Kellyn, they took the time to explain their observations and provide recommendations.

Artisticco LLC © 123RF.com | artisticco

Seven Weeks into Physical Therapy

So here are some pictures seven weeks into physical therapy. Although Kellyn has had some plateaus and regressions since her four week pictures, today happened to be a "good torticollis day." I knew I had to capture it on camera. Basically, Kellyn was holding her head at mid line a lot more frequently than usual. In addition, she was not raising her right shoulder as much as she normally does.

Since she's looking straight ahead, her head tilt is less noticeable here.
Although she still has a slight C-shaped curvature in her trunk,
it's improved dramatically since the beginning of PT.

 

Six Weeks of PT

So I'm not as excited about these six week pictures as I was about the four week pictures.  As you can see her torticollis looks worse in these pictures than it did just a couple of weeks prior.  Her tilt has likely worsened because she is teething.

Overwhelmed with the Treatment Process

The past couple weeks has been pretty hectic for our family.   Ryan's back has been really bothering him and he is pretty limited to how he can help with the kids or with housework.  Unfortunately, he is now unable to help me get Kellyn's in-home exercises done, so its solely up to me to make sure this gets done.  Also, we have been spending a lot of time researching and shopping around for a new car since our car got totaled from the car accident two weeks ago.  In addition, we have also had so many things like doctor's appointments and various commitments to go to.  

With so much going on, its been tricky to get in the recommended minimum of five sets of physical therapy in-home exercises for Kellyn.  I feel that Kellyn's head tilt has gotten worse recently because I haven't been working with her as frequently at home.  Regardless of what else is going on, I need to remind myself daily to make her in-home exercises a priority.  Most days, I find it unrealistic to get all five sets of her exercises done, while also attending to daily household responsibilities and taking care of my family's needs.  Each day, I feel like I can't win no matter how hard I try.  

Discovered Torticollis Clinic Nearby

Today, Kellyn had an appointment with her physical therapist from the early intervention program.  I am still so thrilled that she comes to our house for the appointment.  That makes it so much easier!  Anyways, her PT shared some extremely helpful information with me.  She told me about a torticollis clinic at Children's National Medical Center in Washington DC.  That's less than one hour away from us.  You better believe I was on the phone almost immediately scheduling an appointment there.

Follow-up Helmet Appointment

About four weeks ago, we took Kellyn to get initially evaluated to see if she needed a cranial remolding orthosis. The cranial remolding orthosis is basically a helmet for children who have plagiocephaly. It helps to reshape the head into a more symmetrical shape. At that appointment, Kellyn's measurements fell within the normal range. However, she still had a flat spot on side of her head while the other side jutted out a bit more. The cranial remolding specialist did not recommend a helmet. She suggested lots of tummy time so that the head would likely fill in on its own.

This is the stockinette that goes over the head.

Four Weeks into Physical Therapy

Here are some updated pictures of Kellyn after four weeks of physical therapy.  Her left trunk tilt is much less pronounced and her right head tilt has decreased some, as well.  Her physical therapist noticed that she tilts her head more when she is looking down.  Kellyn is more inclined to keep her head straight when she is looking straight ahead or laying down on her back.  What you won't be able to see in these pictures is how much stronger she is getting at doing her strengthening exercises.  She has also had amazing progress in her motor skill progression.  In addition, I believe her facial symmetry is improving.  I am very pleased with her progress so far.

She holds her head up much more straight when she is looking straight ahead.

Cranial Facial Appointment

Yesterday, my daughter had an appointment with a pediatric cranial facial specialist.  As I mentioned in a previous post, Kellyn has some of the classic facial asymmetries that torticollis can cause: one eye smaller, one cheek fuller, one jawline more pronounced, depression on one side of her neck, and a flat spot on the back of one side of her head.  In my opinion, they are very minor and barely noticeable unless you were looking for them.  But I wanted the doctor to take a look at her and see what he thought.

The cranial facial specialist was outstanding.  He carefully evaluated every facial feature while Kellyn made goo-goo eyes at him.  After his analysis, he confirmed that she did have some minor facial asymmetries and minor plagiocephaly that that were caused by the torticollis.  However, he said that everyone's face is asymmetrical and that her facial asymmetries were not outside the normal range.  He said that the only reason I probably noticed it is because I am her mother and that the average person wouldn't have even noticed.  Phew!  That felt great to hear, especially from a specialist who stares at faces all day long.  If anyone would be critical about that sort of thing, I am assuming it would be him. 

First PT Appointment with Early Intervention

Today was Kellyn's first physical therapy appointment with our state's early intervention program.  Her assigned physical therapist came to our home to work with Kellyn.  I am so excited how quickly we were able to get started with this program.  After having such a great experience with Luke in this program, I feel very confident that we will have great success with Kellyn in it as well.

Ayelet © 123RF.com | yeletkeshet

Early Intervention Program Evaluation

Today was Kellyn's evaluation with our state's early intervention program. It provides support services to families with children who have developmental delays and/or special needs. If a child qualifies, the child will be assigned a therapist to work with her at home. I am quite familiar with this program since my two and a half-year-old son Luke has been receiving services for an expressive language delay since he was about eighteen months old. We absolutely love this program.

Anyways, Kellyn received a full evaluation by a physical therapist, occupational therapist, and a developmental therapist. They would be testing her in various areas to see if she had any developmental delays and if her torticollis warranted any physical therapy services.

Evgenii Kosmissarov © 123RF.com | komissar007

Helmet Evaluation for Plagiocephaly

Today was the big day where we brought our daughter in to get her head evaluated and potentially fitted for a helmet. The official name is a cranial remolding orthosis, but helmet is a lot easier to write out. As I mentioned before, many children with torticollis also have a condition called plagiocephaly. Basically, its a flat spot on the back of their head and it may cause their head to have an asymmetrical shape. The helmet can correct the plagiocephaly by essentially remolding the head shape. Unfortunately, many insurances do not cover the helmet because its often deemed cosmetic. With a $2500 price tag, we were holding our breath to see whether or not they would recommend a helmet for her. The good news is that the evaluation appointment was free, so it wasn't like we had anything to lose by getting her evaluated.

Darren Brode © 123RF.com | photog2112

Feeling Scared

So it seemed like an eternity between the three days of waiting for her pediatrician and physical therapy appointment to get an official diagnosis of torticollis (which at this point, I was almost 100% that she had).  In the meantime, I started researching torticollis on the internet.  I learned about the condition of torticollis and various treatment options.  I scoured torticollis forums on BabyCenter to see what other parents' experiences were.

The one thing that stood out to me was that many babies were diagnosed with this as infants and had started physical therapy early on.  Now my daughter was almost seven months and that almost seemed late to be officially diagnosed and treated in the "torticollis world".  The more I learned about this condition, the more fear and guilt crept into my mommy conscience.  My poor daughter likely started showing signs of this condition around one or two months of age.   That means that I could have spent the last four or five months working with her to correct this problem.

Torticollis Suspected

So for the past few months, I've been noticing my daughter Kellyn has been tilting her head to her right side and tilting her trunk to the left side.  I also noticed that her left eye is open slightly more than her right side.  I mentioned her tilts and her eyes to her doctors when she was about six months old, but no one seemed to be too concerned.  I was given general advice of stretching her and encouraging her to look to her right side.  I was also told that if it doesn't correct itself over time, than she may need physical therapy in the future.