I said I would do an occasional flashback post to show just hw far Carter has come. Here is Flashback #1.
Plagiocephaly, more commonly known as a flat spot. It’s pronounced: plā-jē-ō-ˈsef-ə-lē. This was Carter’s first encounter with a specialist, but certainly not his last. At his 4 month and 6 month check up, our pediatrician mentioned that he had a flat spot. We were familiar with that, as our oldest had a flat spot too. We fixed it with a little repositioning during sleeping and bottle feeding. The pediatrician suggested that we keep an eye on it and se if we could fix it like we did before. I wasn’t worried about it at all. He’ll grow and his head will change. We’ve got this under control.
During the time between our 6 and 9 month check ups, 2 things happened; my husband began to notice that Carter’s head shape was getting worse, and I noticed that Carter was always looking to the left. I mean all the time. I did a little research and found torticollis, a condition that occurs with the muscles in the neck. They tighten on one side and cause the head to lean in only one direction. When the neck tries to move in the opposite direction, it can’t because the muscles have started to shrink and cannot stretch out fully. There are various physical therapy exercises you can do to help loosen those muscles and regain full movement.
I went to Carter’s 9 month check up prepared to ask about his head shape and the lack of neck movement. I didn’t even get the chance to voice my concerns. The doctor took one look at his head, felt it and said that the shape of his head was pretty bad. That’s the first time I heard the word Plagiocephaly. I found out that in many cases Torticollis and Plagiocephaly go hand in hand. At the time, I didn’t understand why Carter refused to turn his head. He always stayed in one position whether he was sleeping, eating, in the car, on the floor, anywhere. No matter how I moved him, he always repositioned himself. Our options were simple: Do nothing and hope that he grows into it, Or see a plastic surgeon who specializes in Plagiocephaly. The specialist is a 4 hour drive from home and Carter would have to wear a “helmet” 23 hours a day for approximately 6 months. My husband and I talked it over, and there really was no choice. We were off to the specialist. We were booked an appointment only 2 weeks later. That was one of the longest two weeks of our lives, up to that point anyway. I wasn’t sure what to expect or how much of the cost our insurance would cover. I had no idea how Carter would adjust to wearing something 23 hours a day either. Summer was quickly approaching and with temperatures reaching over 100 degrees, it sounded more like torture than treatment.
We met with the specialist who said that Carter would benefit greatly from a helmet. This was based on measurements that were taken. The differential of these measurements should be around 6 millimeters, Carter’s was 15.2. We were sent to an office that specializes in these helmets. Carter got a Starband helmet, which is the brand name of the helmet. A scan was taken of his head and that scan was made into a form. The form was used to make his customized helmet. We even got to choose the design that was imprinted on the helmet. We chose a back and white spotted pattern that looked a lot like cow print. It was really cute!! This whole process took almost a month to complete. And then came the big day!!!
We drove the four hours, nervous all the way. The technician, Amy, put the helmet on and we all held our breath. He didn’t even seem to notice!! And he looked pretty cute too! We were told to gradually move up to wearing the helmet all the time. It took 4 days to get to that point, and Carter was AMAZING!!!!! He didn’t have problems sleeping or crawling or maneuvering at all. It was really like h didn’t even know he had it on . . . until we had to take it off. For an hour a day, the helmet was removed so we could wash it and wash him. He would wander around the house looking for it. He was always out of sorts when it was off too. It was like it became a part of him. If he found the helmet, he would drag it around with him and try to put it back on!! He got so used to it being there that he would more readily bump into things because it didn’t hurt. Once again, this was a problem when it was off. He would keep crawling towards something waiting for the helmet to make contact, except now it was his head that collided into table legs and walls.
Every month we made the journey back to see the technician, take measurements and have any adjustments made. We were told Carter would wear the helmet for 6 months. We were also told to expect a millimeter adjustment every month. The goal was to get his number cut in half. He was a 15, so ideal would be 7.5. He was down to a 12!! We were so excited!! Long story short, it only took Carter 2 and a half months to get to an 8 millimeter differential. It was on June 29, just a month after his first birthday that Carter graduated from his helmet. We have saved it, along with the form they made of his head. A tribute and keepsake to an amazing little boy! He never complained. He never cried. He took it all in stride. I know it was much harder for us than it was for him. We worried about him being different, but I think it was paving to road to the differences he faces now. It was during this 2 and a half month period that Carter had his first FPIES reaction. The timing couldn’t have been better. Carter had the most beautiful baby doll head, and now we were able to focus all our energy on helping him eat.
I often wondered what led to the Plagiocephaly. I have slowly been putting the pieces together. Carter was in constant pain as an infant. It was a pain I didn’t understand. It was a pain I could not fix. It was hidden behind the reflux and that happy little smile. Carter kept his body in a curled up fetal position. It was like he was hiding from the pain, trying to crawl away from himself. It is this position that he stayed in and it was the cause of his flat head and the need for the helmet. FPIES has been with us since the beginning, and this was just one more distraction, one more wrong turn, throwing us off in this crazy maze.
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