After Tru was born, he kept his head in the same position all the time. Every time I put him down, I would try to rotate it, but either he'd go rigid and not move, or he'd immediatley move it back. We started propping him up under his shoulder to force his head to roll the other direction, and that worked for a little while. I then bought him a Boppy Noggin Nest to cradle his head in a neutral position. By 2 weeks of age, I started to notice a flat area on his head. I asked the peds in Altus about it, but he was so young when we left (2 months old), it wasn't a worry yet. When we got here to Alabama, I started asking the ped on base. I have been very frustrated with Tru's doctor here. She wouldn't answer my questions or take me seriously. I asked her about his flat head (very noticable now) 4 times between 4 and 7 months of age. At his 7-month appointment, I insisted she give me a referral to a pediatrics neurosurgeon and cranio-facial specialist. She initially turned me down, but I wouldn't budge. I got the referral.
We drove to Birmingham (over 2 hours away) to see these specialists in a plagiocephaly clinic at Children's Hospital of Alabama. The neurologist did not see any problems with Tru's brain function (praise God!), so we didn't need to pursue anything in that field. The plastic surgeon (cranio-facial specialist) said Tru has a moderate case of positional/deformational plagiocephaly. He had us talk to an orthopedics specialst who was there at the clinic. We made an appointment with him (Todd) for the next week in his office in Tuscaloosa (2.5 hours away).
The next week, we met with Todd to scan Tru's head. The scan tells us measurements of asymmetry in millimeters. The scale: up to 5 mm - nothing to worry about; 6 - 8 mm - it's up the parents whether or not to put the child in a cranial band (helmet); over 8 mm - cranial band is recommended; 12 mm and up is severe. Tru's asymmetry is 10.2 mm.
Tru began cranial band therapy 19 November when we picked it up from Todd. Here is what it will mean for us: Tru has to wear it 23 hours a day; we're not sure how long yet, but at least 4 months. (Once he is 12 months old, the treatment doesn't work very well.) Tricare does not pay for this. I will have to drive Tru to Tuscaloosa at least every 2 or 3 weeks for adjustments.
Because Tru is already almost 8 months old, Todd told us we will be lucky to correct his asymmetry 50%. If I had been able to get the referral the first time I asked, we might have completely corrected it.
We think what caused this is a condition called torticollis - the muscle on the side of Tru's neck (sternocleidomastoid) was tight at birth and for many weeks following, so he wouldn't turn his head. Children with plagiocephaly often (85% of the time) had this issue. Also, because Tru got so big so fast, it was just more weight on his soft skull bones, causing them to flatten.
At first, I was very upset. But, I have prayed and prayed. God has given me peace, and He has provided for us financially so we can afford the treatment. Now if He'll just teach Tru how to sleep on these long car trips, we'll be golden. :) He really is handling the helmet well...not bothered by it at all (except for the occassional itchiness).
Todd putting the helmet on for the first time
Tru thinks this is a weird toy...
Just give me my bottle!
No problem. :)
Day 1! Superman!
After a little craft paint, Truie is now the proud owner of his very own flight helmet...just like Daddy, Granddad, and Uncle Bub!
