Plagiocephaly: The 411

January 24, 2020

plagiocephaly, cranial band, wrap buddiesFor many preemies, plagiocephaly (and in some cases, brachycephaly) are yet another thing in which they struggle.  Our son became a high risk after having three bowel surgeries, as a direct result of NEC (necrotizing enterocolitis).  He spent much of his early months on his back and was developmentally delayed in things like rolling and crawling.  Those surgeries also greatly weakened his core muscles.  In addition, he struggled with torticollis, or a tightening of the muscles on one side of his neck that didn’t allow for full range of movement, thus making both his plagiocephaly and brachycephaly worse.  If you’re on Pinterest, check out Hand to Hold’s board on plagiocephaly for articles, helmet bling, information and more.  Here are few things we learned about symptoms, diagnosis and treatment.

1.  Recognize the signs of plagiocephaly

You might initially notice that your infant can easily turn his head to one side and not the other which could indicate torticollis.  The severity, however, would have to be assessed by a medical professional.  As a result of that stiff neck, perhaps you notice a “flattening” on one side of the head, the ears may be asymmetrical or the shape of the head is no longer round.  If you have concerns, visit with your pediatrician.  She may refer you to a specialist, like a plagio clinic or a plastic surgeon for further assessment.  Our neurosurgeon first noticed our son Luke’s flattening on the back of his head and referred us to our local plagio clinic.  After an hour-long assessment it was determined that our son was a candidate for physical therapy and a helmet to help correct the bone formation.

2.  What you can do about plagiocephaly

There are certainly home-based treatments you can try.  Initially, we tried stretching his neck using techniques given to us by Luke’s physical therapist.  In addition, the therapist encouraged us to be aware of his head placement and to stimulate his attention on the side with his stiff neck.

3.  Visit with your pediatrician about physical therapy

During Luke’s three-month well check, my pediatrician was very proactive and mentioned that Luke was at a higher risk for developing torticollis and plagiocephaly, due to his complicated medical history and tethered spinal cord.  Fortunately, she gave us the signs to look for and we were prepared when we began to see them.

plagiocephaly before and after4.  Take photographs

The plagio clinic took before and after photos (one set at 6 months and another at 13 months after five months of wearing the helmet).  However, you can take these types of photos as well, if you are concerned and want/need to document the growing severity.

5.  Research the orthotic options

The DOC Band and the Hanger Cranial Band are two major options we discovered.  Because of insurance coverage, we chose Hanger and were quite pleased.  Our orthotist had many years of experience and I really trusted him.  Whatever option you choose, should the severity warrant it, take the time to do your research and ask lots of questions!

6.  Getting it covered by insurance

Oh, this is the fun part.  Anecdotally, we had heard most insurance companies deny your first claim.  Be prepared for them to question a $2,500+ expense.  Keep documentation like medical records, any photographs you or a medical professional has taken and professional assessments by a therapist, pediatrician or plagio clinic.  They just might come in handy.  Ask your orthotist if the claim is denied, if they will file an appeal for you.  It doesn’t necessarily mean they will collect all the needed information (in fact, I recommend you do the leg work), but they will get it faxed to the correct person at your insurance company and save you valuable time.

7.  Appealing the denial

Our initial claim was denied because it wasn’t “medically necessary.”  However, a conversation with the neurosurgeon, pediatrician, orthotist and plagio clinic said otherwise.  I called our insurance patient care representative and asked what I needed to do to file an appeal.  I gathered up his entire medical history from the neurosurgeon, “before” photos from the plagio clinic and had our pediatrician write a letter explaining the medical necessity.  I learned later it was that letter from our pediatrician that made all the difference.  She and I visited via phone before she wrote it and I told her some of the key points we needed to stress in the letter.  Those key points were things the insurance company had used to deny the appeal.  We proved them wrong!  The appeal was accepted and the helmet was covered at 90%.

8.  Getting your baby used to it 

Honestly, there wasn’t much to this.  We followed the orthotist’s advice of easing him into the helmet, starting with one hour and slowly building up to 23 hours a day.  However, I wore a back brace for my scoliosis for five years, so I wasn’t new to the whole brace thing.  I could tell his temperament was easy going and we just rolled with it.  Within three days he was wearing it and sleeping in it with no problems, much to my surprise.

plagiocephaly helmet, cranial band, wrap buddies9.  Blinging it out

I figured if we were going to get stared at, we might as well make it worth the look!  There is a great nonprofit called Wrap Buddies that wraps helmets for FREE.  It was an amazing experience. Additionally, there are options that aren’t free, but equally cute with Bling Your Band being the most popular.  There is a plethora of decorating ideas on the web, too.

10.  Cleaning tips

The best advice I got was to put rubbing alcohol in a small spray bottle and douse that helmet with it each evening when Luke wasn’t wearing it.  I typically took it off from 7-8pm, during bath time.  I rubbed it down and then set it in front of a box fan to dry.  Because he wore it primarily during the hot summer months, I cleaned it every evening.

And THAT is your 411 on how to navigate the world of plagiocephaly. Have more questions? Leave us a comment!

Editor’s note: This article was originally published in April of 2012 and has been updated as of January 2020.

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