With all the strides she was making, there were just a few things that we were keeping an eye on. Neither was a serious medical issue, but still enough to warrant monitoring and if it didn’t resolve we would need medical intervention.
The first was the back right side of her skull was flattening because she would only turn her head in one direction and would only sleep in one specific way. The other was when she would wake up from either napping or sleeping overnight her eyes would be crusted shut from clogged tear ducts. The plan was that if by 4 months old the skull had not started to reshape we would need to go see a specialist for a DOC band and physical therapy for her neck muscles.
Well, she turned 4 months old, and her skull had not started to reshape so we were referred to Cranial Technologies in Paramus. It was almost an hour’s drive away, but I would go to the ends of the earth for my children. Once there, they took some “entrance pictures” and 3D imaging to determine if the flattening was enough to require the DOC band (something that looks like a wrestlers helmet that helps the skull bones grow back into shape). It wasn’t really a surprise when they deemed that she was a candidate for it.
They explained to me that the medical term for the flattening is plagiocephaly (an asymmetrical distortion of the skull). They would fit Phoebe for a DOC band, and we would have to come to the office three times a week to have the inside of the band shaved as her skull rounded out. She would need to wear the band 23 hours a day, for an undetermined length of time. They also told us that as she grew and got closer to her first birthday, we may need a second band because she could potentially need to continue wearing it, but would eventually outgrow the first one.
This would be our first issue with insurance not covering things she would need. The band costs 3800.00, and if insurance covers it they cover it all. Unfortunately for us, our insurance would not approve the cost of the band. We had to pay for it fully out of pocket. The frustrating part was that if we needed a second band, it would cost us an additional 3800.00.
The techs at Cranial Technologies also explained from what they noticed on physical exam is that the muscles in the right side of her neck were shorter and tighter then the muscles on the left side of her neck. This is a condition known as torticollis. This condition is what caused the plagiocephaly to occur. They told us we would need to find a physical therapist to help us with the neck muscles.
It is nearly impossible to find a physical therapist for a 4 month old baby. I called over 60 places throughout the state explaining what my daughter was diagnosed with and what she needed. Every time I would be told that they do not work on children as young as Phoebe. I started to feel defeated, thinking we would never find the help we needed. I gathered all my strength to call one last number on my list before admitting defeat. And I am glad I called them. I called Summit Medical Group and they had a therapist who knows how to work with children as young as Phoebe was! We finally had our physical therapist!
Treatment could now begin!
The stretches the physical therapist gave us were a huge help! Slowly but surely Phoebe was able to turn her head in both directions and she gained more and more movement and flexibility. After a few months we were discharged from physical therapy.
The DOC band started to work almost immediately (with aid of the therapy). We would go to Paramus three times a week and each time they would shave a little out of the inside of it. When Phoebe was about 6 1/2 months old, it was determined that we would need a second band because she outgrew the first one. The saving grace was that our insurance company had changed and this time they covered the full cost of the band!
Once we got the second band, out trips to Paramus were down to once a week because growth steadies out the closer you get the age 1, and they were estimating that she would only need to wear it for a few more months. They were right! When Phoebe turned 11 months old, the officially took her exit photos and discharged her from their service because her skull was where it was supposed to be! Our little champion did it again!
Now we were just waiting to see if her eyes would clear up on there own.
Photo: Phoebe in her decorated DOC band