31 Days of Awareness: Plagio/Brachy Awareness

Plagiocephaly/Brachycephaly Awareness

Awareness Color: None
Awareness Week: In August (dates vary)

Plagiocephaly is the word that is used to describe a diagonal asymmetry across the head shape. This word particularly describes a flattening which is to one side at the back of the head and there is often some facial asymmetry. Brachycephaly describes a very wide head shape with a flattening across the whole back of the head.

April Photostudy

The picture on the left is when he started the cranial banding in November, and the picture on the right is his picture taken just a few days ago. Notice how much his head has rounded out.

Its been a while

I know. I am sorry. Things have been hectic around here. My main blog has some details on things going on with Alvin. So, look for updates over there for the past couple of months. However, I promise I will actually update THIS one from now on.

Here are his new helmet designs.

December 23rd's visit to Cranial Tech

Yes, that is a new design on his cranial band. The other started peeling off, so we took it the rest of the way off and put this new one on. Its Chip and Dale. The red is more sparly than it shows in the pics.

Anyway, to the visit. There is definate improvement in his head shape. He is getting a very slight roundness to his posterier and he is filling out in his forehead. Yay! Good news for once! Woo hoo! We got back again in 2 weeks.

In other news, we finally got his appointment to the see GI scheduled. He goes there on February 4th. Yes, the day before his bday. (and my actual bday). We get to spend it in a doctor's office. What fun. But, at least we got the appointment.

Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.

We have his photostudy back. So here goes:

Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.

Increased posterior head height and a sloped forehead.

Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right

Alvin's Photostudy

Well, its officially been a week since Alvin was banded. He is adjusting well to it. He still gets upset when it's time to lay down with it on, but other than that, he is doing well.

We have his photostudy back. So here goes:

Alvin is a 9 month old male referred to Cranial Technologies for treatment of his brachycephaly. He presents with left occipital flattening, right frontal flattening, and associated facial asymmetery. He has an ear shift with the left ear anterior to the right and an increased head width to length ratio.

Increased posterior head height and a sloped forehead.

Left occipital flattening; right frontal flattening; increased head width to height ratio; left eye and cheek anterior to the right

Day 3

His helmet once we decorated it

So, he is still having fits while the band is on. But, it is getting better. We are up to 5 hours on, 1 hour off. We start going down for a nap today with it on. Then, to 7 hours on, 1 hour off tommorrow. Then finally on Saturday night, he will go to bed with it on and on Sunday be wearing it for the full 23 hours a day.

He has been banded!

So, today was the day. He will wear the band for approx. 14 weeks. That is all dependant on how well this works.

Cranial Tech-Visit 1

So, we went to Cranial Technologies yesterday and started on the journey of cranial banding. We had a nurses consultation, then a head scan with digital imaging, then off to the photo study and "headsicling".

I feel bad for my little man. He -hates- his head being messed with and that is all they did yesterday.

Getting his consultation done. He was happy at this point.




The horrid stocking they had to put on his head to do the digital imaging and all that. He hated it.


Waiting on the photostudy to begin.

Background Information

Well, since some of you might be new to his story, or some may just not know fully. Here is the background to Alvin's story.

He was born almost a month early and after severe circumstances during his pregnancy. Around 2 months of age, the Pediatrician noticed that Alvin could not move his head to the right, and that his head was becoming increasingly more deformed.

This led to many hours of "tummy time" per day. Up to 8 hours on some days. No marked improvement was made. In fact, his head only got worse. So, then it was off to Dr John Persing at Yale Medical in New Haven. Dr Persing is a craniofacial specialist.

Once their, he diagnosed my baby with severe Plagiocephaly and Brachycephaly. This was partially being caused by his Torticollis. Their suggestion on treatment was a DOC Band. So, this diagnosis began the 5 month fight to get Tricare to pay for this treatment. They refused and continue to refuse.

So, today begins Alvin's journey. We are paying for his treatment out of pocket. Today we are going to have a head cast made and Alvin to have a full work up on any other underlying issues he may have. Cross you fingers, this might get bumpy.




**For more information on Prevention of head deformities, please visit: Heads Up Baby and Cranial Technologies **

Welcome

So, I am starting this blog as a way for people to follow Alvin's treatment and development, without taking over my entire blog.

So, we go on November 4th to Cranial technologies to get his head scan and get fitted for the DOC band. Then, we will be picking up the band on November 18th, if not before. so, here we go!