Reese's Head Shape Evaluation Appointment

Today was our appointment at Children's Memorial for Reese's head shape evaluation (that's actually what they call it). The appointment went very well, & we were extremely impressed with the care that she received. They told us to plan to be there for about 2 hours, & they weren't kidding. Her appointment was at 4:20, & we didn't leave there until 6:30. I'll give you a detailed description of her appointment, but if you aren't a meat and potatoes kind of person, & you'd rather just skip to the dessert, you can scroll to the final paragraph. :)

Our appointment started with a general evaluation & health/birth history with a nurse. After that, Dr. Vicari (a craniofacial surgeon), and Julie (a physical therapist) came in. They did a few examinations to check Reese's head & neck & her overall musculoskeletal development. It was determined that Reese is still not fully using the right side of her neck. They estimated that she is only using it about 2/3 as much as she should be (and her range of motion reflects that). It was really interesting to watch them do the tests, because from just watching her on a daily basis, it seems like she uses that side pretty well. When they did the tests, it was very obvious that when she gets to a certain point in turning her head, she starts to turn the other side of her body, & she tilts her head backwards to give herself further range of motion, because she can't actually fully turn her neck. It was amazing how obvious those tests made the problem. (This problem is called torticollis, by the way. It essentially means that her neck is twisted.)

Unfortunately, we were also told that pretty much everything we have been doing to help her so far have been the wrong things to do. As soon as we realized that this flatness was occurring, we wanted to do everything we could to keep her off of her back as much as possible. So, we started using a Bumbo seat, and an exersaucer to keep her entertained during the day. Apparently, these are TERRIBLE for baby's musculoskeletal development, & can further the problem. Arrrgggghhhh!

Our next step was to go down the hall & have a scan done of Reese's head. In order to do the scan, they had to put a nylon cap on her that fully covers her head & hair so that her actual head shape can be seen, without any distractions. The scan machine is pretty cool. Since the problem is external, it can be done without using any x-rays, & it is accurate to .5mm. They laid her in the scanner, & the scan only took 2 seconds (literally). Well, actually, it took a little longer than that because they had to do it a few times. Unfortunately, Reese didn't like being handled by strangers during the initial part of our appointment, & she really didn't like them trying to get her to use her neck muscles. So, since she had screamed through that entire portion of the appointment, she was still upset & crying through the whole scan. The poor girl was beside herself, & there was nothing we could do to calm her down. So, even though the ladies doing the scan were super sweet, & had a ton of really exciting toys to show her (they even had a Mickey Mouse laser thingy that they showed her with the lights off), she didn't want ANYTHING to do with them or their scan machine. So, they had to do it a couple times because she kept moving. Yes, that's right. She couldn't hold still for TWO SECONDS. That's a 6 month old for you!

So, anyways, we eventually got the scan completed. They showed us the initial image on the computer screen, & it was pretty cool. You could see the exact shape of her head, & every little detail. It took about 10 minutes for the computer to process the data, & then we met with Dr. Vicari & the physical therapist again to review the results. We went over a print out of one of the cross sections of the scan, which was taken from her head just above her ears. Here is the scan:

The arrow in the scan is indicating her nose, & the little squiggles indicate her ears (so that you can understand the position of the scan). As the line demonstrates, the right side of the back of her head is flatter than the left. The biggest concern though, is that her head should be an oval shape. Because of the flattening, there is bulging in the center of her head (as you can see in the area of her ears), & her head is more round. This is mainly a problem because the brain naturally develops in an oval shape. He explained that the brain will adapt & start growing in the shape of the skull, but that it isn't ideal.

The numbers on the right are lots of measurements and ratios. Here is a quick explanation of the numbers (feel free to skip this part if you aren't interested in the technicalities!):

Cephalic Ratio: This is the ratio of the cranial width to length. An ideal ratio would be .76-.78. Reese's ratio is .925, indicating again that her head is more round than oval.

Radial Symmetry Index: In short, this compares the size of the right side of the head to the size of the left side of the head. The ideal number here would be zero, but anything lower than 25 could still be considered normal. Reese's measurement was 31.1, which is considered mild.

Oblique Measurements: Basically, these measure to determine whether the positions of the eyes are symmetrical. Anything under 10mm is considered mild, & Reese's measurement was 5.7mm.

Q1,Q2,Q3, Q4 Volumes measure the size of the 4 quadrants of her head starting from front left, then front right, back right, and back left. As you can see, the back right is significantly smaller than the other quadrants. The difference between the back right & back left is 38cc, & anything over 30 is considered moderate (our first moderate score, boo!).

The Symmetry ratios evaluate overall symmetry. The anterior symmetry was our biggest concern. When the back of the head gets flattened, the skull starts to bulge in other places. This can cause one side of the face to bulge, cause the forehead to bulge, or cause the eyes or ears to become asymmetrical (sadly, we saw other babies in the waiting room with these features). A flat spot in the back of the head can be covered up (especially for a girl), but facial asymmetry is a very big deal, & it's the main thing that we are going through all of this to try to avoid. Luckily, right now, her anterior symmetry ratio is .97. The ideal number would be 1, but the doctor said that a 1 is an impossible score, so .97 is very, very good. As you can see, her posterior symmetry is not as fantastic (.827). Her overall symmetry (which is just an average of the two) is .898.

So, overall, it was kind of good news. Her case is considered relatively mild, & therefore, we have a very good chance at excellent success, & in avoiding any kind of long term asymmetry (especially facial) if we get serious about treatment now. His recommendation is to start with physical therapy. Normally, he would want 2 months of PT before re-evaluating. However, due to her age, he doesn't want to waste too much time. Dr. Vicari said that he only recommends helmets in about 1/3 of cases, but because of Reese's age, the chances of her needing one are closer to 50/50. So, after 5 weeks of PT, he wants to see her again for another scan. We will compare the 2 scans to determine if significant progress is being made. If it is, then we will continue with PT. If not, it will be time to get fitted for a helmet. He estimated that helmet therapy would last for approximately 4 months. Obviously, we will have a lot more questions to ask if that situation arises, but at this point, we are just trying to stay positive & hope that it will not be necessary. He referred us to a pediatric PT in Oswego, which is just about 10 minutes from our house, so I have already left them a message, & I'm hoping to get scheduled & get this started ASAP!

I can't post a blog update without any photos (the picture of the poor girl in her nylon cap doesn't count), so here are some pictures of Reese sitting in my pink chair that I played in when I was a little girl. She looks SO BIG sitting in it! (If you're wondering what she's smiling at in the pictures, it's her Daddy.)