Hellobee

The nurse practitioner referred us to Early Intervention in hopes that physical therapy would correct Charlotte’s torticollis and in turn, correct the plagiocephaly. Her recommendation was weekly physical therapy sessions and she wanted to see 6-8 PT sessions under Charlie’s belt before we regrouped to explore helmet therapy. It sounded simple enough, and we were ready and willing to do whatever it took. And, if I’m being perfectly honest, I wanted to avoid the helmet route if at all possible. The Nurse Practitioner warned us that the helmet would cost $3500 plus the cost of weekly visits and laser measurements, and if a helmet was needed, we were looking at 3-6 months of therapy and the possibility of needing two helmets. I knew in the pit of my stomach that we’d have a hard time with our insurance having this covered, even though the NP said that our insurance company was usually pretty good about covering helmets. I really wanted to give PT a fair shot so we could say we did everything we could to avoid a helmet.

I was pretty emotional about this. I mean, I had a rough pregnancy. It was difficult to even get pregnant with her and I spent the majority of the pregnancy worrying I was going to lose her. Then after she was born I found out that she was wedged in there funny and my body pretty much caused this to her. I felt a tremendous amount of guilt, so I cried and felt awful, and at the same time all I saw were dollar signs which caused me even more anxiety and guilt. I was also suffering from postpartum anxiety at the same time.

unimpressed Charlotte at the doctor’s office

We left that day with instructions to call EI and were told that they were “great but slow, so stay on top of them,” and that I might have to call a few times to get the ball rolling. Here in Pennsylvania EI is free, and we opted to go this route instead of through our insurance for a few reasons, but the biggest advantage was they would come to our house. This meant less germs, less driving in the snow, and less having to take two kids out of the house, and me not having to entertain Chloe while helping Charlotte with PT. It really would have been a lot on my shoulders otherwise!

I called on the way home from the hospital and left a message to start EI. That was the Tuesday before Thanksgiving. I got a call back the next day, which was a pleasant surprise, and was told that our service coordinator would be calling me to set up an in-home meeting within the next two weeks – and she surpassed that expectation by one week. I met our service coordinator just after Charlotte turned three months old, and we did our initial meeting in our home. She told me that they are required to have someone come in our home within the next four weeks to evaluate Charlotte to see if she qualifies for additional services, gave me two dates to choose from, and that she would follow up to let me know which date the PT evaluator chose. The evaluation session would take about 2 hours. I picked December 12 and December 15, and the evaluator chose December 15. I thought this was great timing, to be honest. The protocol was four weeks, and here I was, choosing dates a mere 14 days later!

The evaluation was lengthy and thorough. Both our service coordinator and the PT evaluator met in our home. The service coordinator took notes while the physical therapist worked with Charlotte. They had notes from the doctors and nurse we met with at Children’s, which was nice to read. It took closer to three hours to complete, I think, and I learned a lot from it. Charlotte tolerated it very well and I was pleased to learn that she was above average in most categories and didn’t qualify for any additional services. The PT evaluator commented that she didn’t think Charlotte’s plagio was very noticeable and she normally sees cases with a severe deformation. She also suspected that Charlotte wouldn’t need a helmet. She was confident that PT would correct the torticollis and plagiocephaly, and I was excited to get started on our journey.

sisters.

We ended the session knowing that Charlotte qualified for PT services based on her diagnosis of torticollis and plagio. Our service coordinator said that by law, they are required to have a PT in our home within the next two weeks. I was curious how this would play out since Christmas and New Years were just around the corner. I know this has been tough to follow, so here’s quick breakdown of the time frame – and remember, our surgeon said they wanted to see 6-8 PT sessions before Charlotte turned 5-6 months old:

November 25 – initial visit at Children’s + our diagnosis (Charlotte is actually 2.5 months old)
December 3 – initial visit with service coordinator (Charlotte is 3 months old)
December 15 – PT evaluation
January 7 – first full PT session (Charlotte is now 4 months old)

We had one PT session at the tail end of December and it was mostly paper work. Charlotte was very unhappy and uncooperative, and they got in maybe 10 minutes of our 60 minute session. She called it a “freebie” and we scheduled for the following week, which was January 7 – and Charlotte did excellent at that visit. On January 9, Charlotte had a follow up appointment at Children’s, where they had to make a judgment call to do the helmet or not, and guess what?

She needs a helmet. There was absolutely no change in her asymmetry at all. Well, of course there wasn’t. We hadn’t even started PT yet.

It would have been nice if the timeline had moved along more quickly. I really stressed to everyone how we wanted to avoid helmet therapy and wanted to give PT a fair shot, but we really didn’t even get to. All we’d been doing was stretches and repositioning. The nurse practitioner said her torticollis was improving and to continue with PT, but referred us to a center to have her head laser measured to be fitted for a helmet. In hindsight, I’m wondering if we would have been better off going to a private physical therapist. If we’d have gone that route, we’d have 9 weeks of PT under our belt right now, and to date, we’ve had two PT sessions in our home through Early Intervention.

It’s hard to say what should have been done differently, though. Those protocols were in place and we were made aware of them at each visit with our service coordinator, so the timeline really shouldn’t come as a surprise. Should we have called and pushed for quicker service? Is it unreasonable to expect sooner visits? Is the cranio-facial team expecting miracle work and the impossible?

Next up, navigating insurance.