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.

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.

Rolling Belly-to-Back (towards right side)

Kellyn could easily roll from belly-to-back towards her left side.  This makes sense since her trunk favors the left side.  She had a much harder time putting weight and pressure on her right side of her trunk.  Therefore, her PT really encourage us to work with her on rolling this way.

1.  Place Kellyn on her tummy and put a toy on her left side of her body.

2.  If possible, encourage her to reach her left hand up and out towards the toy.  Her head should tilt back as she looks up at the toy.

Kellyn's got some serious bed-head going on in this picture.

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. 

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.

TOT Collar Review

I am the type of person who wants to feel like I have exhausted EVERY avenue possible to fix a problem.  So when I heard about the TOT collar on a torticollis forum, I immediately started researching it.  Basically the TOT collar is a device to help correct torticollis.  It is is made out of soft tubing that goes around the child's neck.  The TOT collar has two vertical nylon tubes positioned on the torticollis side that discourage the child from tilting his head to that particular side.  Please note that it is very important to always be supervising your child when he/she is wearing the TOT collar.  It also should not be used while sleeping or riding in a car seat.  As far as the reviews I read about the TOT collar, they were mixed.  Some parents liked it and thought it helped, while others said it did not help as much.  But for the price, I thought it was worth it if there was a possibility of it helping our daughter.

In this picture, the TOT collar was working quite well for her.

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

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.

hermione13 © 123RF.com | hermione13

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

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.