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.

Physical Therapy 4-week Evaluation

So today was a big day for us because it was Kellyn's 4-week evaluation at her outpatient physical therapy clinic.  Overall, it went pretty well.  Four weeks ago, Kellyn measured at about an eighteen degree tilt.  Today Kellyn was measuring at about a ten degree tilt.  So she is definitely tilting her head less.  The physical therapist also noticed improved strength in both her neck and trunk.  *Anna was also happy with how Kellyn's gross motor skills were progressing. She said that Kellyn has progressed faster than she expected in many areas.

Kellyn around the time of her four week physical therapy evaluation. 

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.

Kellyn's Progress in Physical Therapy

So Kellyn has been in physical therapy now for about three weeks.  Overall, I think she is making good progress.  I have noticed that her right head tilt is not as pronounced as it previously was.  Also when I tilt her to her right, she is now able to pick her head up much easier than she used to.  So her neck muscles have definitely strengthened.  Her trunk is much less inclined to tilt to the left now too.  I think the lessening of her trunk tilt is a more dramatic improvement compared to her the decrease in her head tilt.

Before Pictures

Here are some pictures of Kellyn before or at the beginning of physical therapy.  Her physical therapist suggested we take pictures of Kellyn regularly.  That way, I can track her progress since its hard to notice the changes since I'm with her all the time.  I'm trying to see if her neck and trunk straighten up and her slight facial asymmetries resulting from the torticollis resolve themselves over time.

 This is the back view of her head tilt at approximately 1 week into physical therapy.    

Ophthalmologist Appointment & Scoliosis Evaluation

Today is one of those appointment filled days for Kellyn. After this morning's evaluation with the early intervention program, we had an ophthalmologist and pediatrician appointment scheduled for the afternoon. As I had mentioned previously, children with torticollis occasionally have vision issues that cause them to tilt their head in a certain direction. Just to be on the safe side, we wanted to have her vision tested. At the ophthalmologist appointment, they discovered that she was about twice as farsighted as the average seven month old. The doctor shared that her vision both near and far was not great. Immediately, I started to freak out in my head. "Is she going blind?," I asked with with alarm written across my face. He shook his head no and said that she may need to wear glasses down the line. He did not recommend glasses at this time because he said babies' vision could naturally improve in time. Compared to my initial concern with her going blind, the prospect of her possibly having to wear glasses in the future seemed totally tolerable.

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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.

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Basic Neck Stretch for Right Torticollis

This stretch will help Kellyn tilt her head in the opposite direction that she's inclined to lean.  It also helps her stretch her tight right neck muscles.  This is one of her least favorite stretches. Please note that she has right torticollis.

1.  Take your left hand and hold down her right shoulder.

2.  Take your right hand and very gently bring her left ear towards her left shoulder.

Torticollis Diagnosis

On Friday, Kellyn had her two big appointments with her pediatrician and her physical therapist.  Her pediatrician officially diagnosed her with torticollis.  Later that day, Kellyn had an initial evaluation with an outpatient physical therapist.  She confirmed the diagnosis, did some initial physical therapy exercises with Kellyn, and gave us a helpful flyer to take home that outlined her exercises with detailed descriptions and pictures.  I was so nervous about her initial physical therapy appointment that I brought along two sources of moral support: my husband and my mother :)  I felt less anxious with them by my side.

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.