Hand to Hold's Official Blog: Written by Parents for Parents

Plagiocephaly: The 411

For 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.  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 assymetrical 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.  Two great online resources for more information about plagiocephaly, brachycephaly and torticollis are Alexandra’s P.H.A.T.E. and Baby Begin.

2.  What you can do.  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.

4.  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 temperment 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.

9.  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 company in Dallas, 360Wraps, that created a nonprofit called Wrap Buddies.  They wrap helmets for FREE.  It was an amazing experience.  Since Luke’s helmet was wrapped back in July 2010, more shops have signed on around the country.  With 42 shops in 23 states, there’s bound to be one near you:  Wrap Buddies Partner Shops  A few other shops have created something similar, Wraps 4 Wellness is one.  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.

Kathryn Whitaker About Kathryn Whitaker

Kathryn Whitaker (TX) is the mother of six (including two 36-week preemies).  Her fifth child was diagnosed with IUGR (intrauterine growth restriction), born at 3lbs. 9oz. and then developed a severe surgical case of necrotizing enterocolitis (NEC).  He has various medical needs as a direct, and indirect, result.  On her personal blog, Team Whitaker, she writes about what she knows: big families, carpool, kids activities, faith, her beloved Aggies, specialist appointments and sanity checks with her husband.  You can follow her on Twitter, Facebook and Pinterest.

Comments

  1. Melissa D says:

    Kathryn, this is a wonderful article! Our daughter is in her second month of helmet wearing and I wish this article had been around at the beginning of our journey three months ago! 🙂

    Both of my girls have brachycephaly…my first daughter was a 26 weeker and we didn’t get a diagnosis until she was already 1, so we decided NOT to helmet her. Three years later, I’m at peace with that decision, but I was determined to helm our NEXT child not have a flat spot.

    Our second daughter made it all the way to 37 weeks, but was born with a slightly flat head. I made sure to wear her when we ran errands (instead of leaving her in the carseat) and avoided the bouncy chair/swing except in rare instances (like showers!). Her head stayed flat, unfortunately, so we went to the neurosurgeon and Hanger.

    Kate started with a cephalic index of 104% and she’s worked her way down to 100%. Wearing a helmet 23 hours a day can’t be fun, but she has a great attitude! It really helps that we decorated her helmet (https://www.facebook.com/pages/Plagiocephaly-Band-Designs/213410388700411) and found a helmet “support group” on Facebook.

    I really appreciate that y’all are keeping this site going!
    Melissa

  2. Hi, you offer great info. I’d love for you to check out our organization on Facebook and the web. http://www.facebook.com/plagiocephaly.awareness.support.
    Nogginroundup.com

    Thanks Reesa

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