Plagiocephaly - An update!

Max had a follow-up appointment this morning at Children's Hospital for his cranial band. We received terrific news - the helmet is working! We met with the clinical nurse specialist and her measurements showed over a 50% improvement. According to her records, Max started at an 8 mm difference (I thought it was 7), and he now measures a 3 mm difference - and his goal was to be between 0 and 3! She stated that she can really tell he has been wearing the helmet - both by looking at his head and the helmet (the inside of the helmet has some area of discoloration, where his head has contact with the helmet). She stated if this had been his first appointment, that a cranial band would not have been her recommendation! However, there is a second set of measurements - length and width - that we can still try to improve. Max originally had a very round head, and a 'normal' head is more oval. Max started at a 96% (100% is perfectly round) and he is now at a 92%. Originally the goal was to be below 90%, but since Max has made such great improvements so fast, we have decided to continue to wear the helmet and see if Max can get down to an 87%. We no longer need to go to Children's Hospital, we will just now continue our appointments with the orthotist at a local office here in town, and she will decide when we should discontinue use - maybe just a month or so. We also learned that when we do decide to discontinue wearing the helmet, that Max will need to wean the wear time. The helmet is not so much a 'cranial band' but a 'crash helmet', as the nurse put it! Max will have to learn how to protect his head. Right now, Max falls, bangs his head on his crib and doesn't seem to notice since he has some protection. The wean time is to only be about a week. We were so happy with the news, that we took Max out to breakfast! And one final picture - I think Max is thinking - Mom, knock it off with the camera!

Plagiocephaly

This is a post that I have been wanting to do for about a month now. Max has a condition called plagiocephaly, which basically means the flattening of the left and/or right side of the head. I noticed that Max's head was not perfectly round in August. He appeared to have a flat area on the left side of his head. Max always had a tendency to look to the left when he slept. I called the pediatrician and he suggested some 'exercises' to help Max look more to his right side than his left. We tried these for a month, as well as increased tummy time (he already had been on his tummy for extended periods), and at Max's 4 month appointment in September our pediatrician referred us to the Plastic Surgery department at Cincinnati Children's Hospital. I called for the appointment - the first availability was not until mid-November!

Max's first appt at Children's - 6 months

Pat, Max and I headed down to Children's in November for our first appointment. The first part of the appointment was actually set-up in a classroom with other families whose children had plagiocephaly. We learned more about the condition and that the number of children who have it is increasing. A large contributing factor is the 'back to sleep' campaign and SIDS. After our 'class' we met with a clinical nurse specialist. She did two sets of measurements on Max's head. The first measurement were the two diagonals across his head. The difference in the measurements was only 7mm, which is considered mild. After doing a second measurement, length and width, it was determined that Max also had brachycephaly, which is the flattening of the back side of the head. He was measuring a 96% (severe cases are 99%, and this is found by taking the length and dividing it by the width). Because of the combined conditions, it appears that Max has a very flat left side, but the numbers actually state it is mild. Regardless, it was decided that Max would be fitted for a cranial band.

Max's first pic with helmet - riding in the car! 7 months

Children's Hospital then referred us to The Brace Shop to meet with an orthotist to be measured for a helmet. The process was quite interesting! Max had to wear a 'sock' on his head, and with a grocery-type scanner, his head was scanned and an image appeared on a computer screen. The image, along with some measurements, were sent off to Pheonix so that a cranial band could be made. Two weeks later Max started to wear the helmet. For the first week, he was 'weaned' into the wearing schedule. First it was an hour on, an hour off. Each day adding longer intervals of wear time.

First day wearing the cranial band - 7 months

By the end of the first week Max was wearing the helmet full time - 23 hours a day. He only gets one hour of helmet-freedom a day - just enough for a bath and helmet cleaning. At the end of the first week, his orthotist said he was doing well. Three weeks later was our first real follow-up appointment. Max has made some progress! With his diagonal measurement, Max went from a 7mm to a 6mm - and our goal is to be between 0-3 mm. The length/width measurement went from a 96% to a 92% - a large jump - and our goal is to be below 90%. So the cranial band is working!

7 months

Our next follow-up is next week at Children's Hospital with the clinical nurse specialist in the Plastic Surgery department, and a week later with the orthotist. The initial timeline given to us was Max would be wearing a helmet about 3 months. It all depends on when the brain has growth spurts and how long the spurts last.

7 months

7.5 months - Christmas morning

Max's helmet has not slowed him down! He can do all the things any other child his age can do. He plays, sleeps, eats and rides in the car with his helmet. We always said that Max is our little skydiver - now he just looks like a professional!

Happy New Year!

While Pat and I went out to dinner New Year's Eve - to Blue Point in the warehouse district of Cleveland, and it was delicious - my parents had a little party with Leah while Max was already in bed. The final image is actually a video that I have to say is pretty funny!