Danny is now 7 months old. He's sweet, his smile melts my heart and the fact that for the time being, he thinks I'm the best thing in the world, leaves my world a lot more desirable. At 4 months, I noticed that Danny's head had a slope. His back right head was flattened while the back left protruded.
Being the medical nerd (and over involved mom) that I am, I knew right away that it was either craniosynostosis, or some form of plagiocephaly. Craniosynostosis is premature closing of the soft spots (sutures, fontanales). This causes the skull to misshapen. Plagiocephaly, on the other hand is primarily a positional issue. Be it sleeping patterns, or position in the womb.
I mentioned it to his pediatrician who seemed to not know what I was talking about but said it would self correct. Fair enough, he has the degree.
2 months later and trying the techniques of switching sleeping sides and tons of tummy time with no improvement, I grew frustrated. So at his 6 month checkup, we demanded a referral.
After the office losing our referral several times, they finally pushed one through to a neurologist.
Only, one problem - the wait list was 3 months out and correcting either diagnosis would require early treatment for the best outcome. Suddenly I was having flashbacks to fighting with Ethan's pediatrician for his issue and reliving that stress all over. I call the pediatrician and politely express my concern with timing and ask to be sent to another location. They promise to get on it but I later found out that they missed that one too 😡
Good news came when the neurologist office calls a few days later to inform me if a cancellation on Halloween. Needless to say, I snagged it up.
The appointment was short, the neurologist said one soft spot felt as if it were closing early, but since it was still open he would avoid surgery. He went on to say that he would order a referral for a CAT scan to rule out craniosynostosis- but that he would diagnose as plagiocephaly for the time being. He said once that came back it could take months to be referred to a cranio facial specialist. MONTHS?!
Just, no. I'm a mama bear over here and that wasn't going to work.
I tried poking around plagiocephaly support groups for advice but no one seemed interested in conversation. Eventually, however, someone brought up Cranial Technologies and I decided to call. The nearest office was 2 1/2 hours out, but for our child, worth it.
The first visit was free. It included a scan and report. CT decided a DOC BAND helmet would need to be prescribed and so we hounded the pediatrician office to sign off on it. They lost that too. Stephen got annoyed and drove to the pediatrician, while the wonderful staff at CT refaxed the paperwork. In true fed up Dad fashion, he didn't leave until the paperwork was signed and sent back.
Today we wen back to CT for Danny to be fitted for his custom helmet. In two more weeks he will have it and wear it 23 hours a day for 4 months.
As of now, insurance is eating the 4 thousand dollar cost. Thank God, because I wasn't sure what we were going to do.
I should mention we have the CAT scan Thursday.
I don't feel weird about the helmet, I'm thankful it exists to correct the skull. I will have to admit, the first time I saw a baby with one, I was a young teen and wondered, "why the parents put the baby in a helmet, was he falling a lot? Were they over protective?" And, here we are...
He doesn't fall, he barely wants to crawl, but we are definitely overprotective, and he will definitely be okay when it's all over. God is so good!
