Information, Tips, & Links

Plagiocephaly Prevention
Quick Tips

~ Alternate sleep position in the crib (head at top of crib, bottom of crib) -always place baby on back to prevent SIDS

~ Alternate position on changing table

~ Alternate which side you hold your baby during feedings

~  Alternate the hip or arm with which you carry your baby

~ Limit use of swings, bouncy seats, car seats, & strollers

~ Use of a front infant carrier -to "wear" baby
(like Baby Bjorn, Snugli, etc.)

~ Rotate the position of toys in the crib, stroller, and car seat during play time

~ Provide lots of
supervised tummy time


Most infants who develop plagiocephaly have some form of neck dysfunction (torticollis). Identifying and treating neck tightness can prevent and correct the deformation. After an evaluation by a  physical therapist, stretching exercises should be performed.


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Abnormal Head Shape Overview

~
Plagiocephaly
It's called a parallelogram deformity. If you look down on the infant's head, the head looks as if half of the head has been pushed forward, often accompanied by misalignment of the ears, facial asymmetry & bulging forehead.

~ Scaphocephaly
A head with a long, narrow shape, and is particularly common in premature babies.

~
Brachycephaly
The head flattens uniformly, causing a wider and shorter shape. Increased head height is also common in children with brachycephaly.

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Insurance Help

~Links to Sample Appeal Letters

Plagio group letters

CAPPSKIDS letters
   

Each state has its own insurance department to oversee all types of insurance for enforcing laws and regulations. Click here for your state's website info:
Dept of Insurance

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Other Helpful Links

~Torticollis exercises

~
Early Intervention - The State provides services to infants and toddlers (ages birth through 3 years) with disabilities or who are at risk of developing disabilities in any of the following areas:
• Physical
• Cognitive
• Communication
• Social or emotional
• Adaptive development

~
Angel Flight -offers free flights to treatment

~
CAPPS Awareness bands -Make your community aware of Craniosynostosis and Postional Plagiocephaly by wearing one of these colorful bands

~
CAPPS Apparel
-for parents and baby

~Plagio related
books of interest for parents and children

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UPDATES

Insurance Update:
~UHC denied prauthorization on 9/08/05

~We submitted a 25 page appeal letter on 10/05/05

~UHC denied our appeal on 10/20/05

~A hearing with UHC was scheduled for 11/4/05

~UHC once again, denied coverage 11/7/05 -final appeal



Nathan's Treatment:

UPDATED 12/01/05
~ Nathan's head is "rounding" quite nicely. However, his facial asymmetry is not changing after 10 weeks of treatment. Nathan will be going into a second band on Dec. 5 for treatment for 3 more months.  This is a long process, but we are confident Nathan is getting the best care at Cranial Tech and we expect to see great results. Once again, United Health Care refuses to pay.


UPDATED 2/28/06
~ Nathan has seen considerable correction and has come from a 16mm cranial vault asymmetry (severe plagiocephaly) to 4mm (0-3mm is considered normal). Nathan GRADUATED from the DOC band today!

We are extremely happy with the results and highly recommend Cranial Technologies.


Legislation:

UPDATED 3/6/06
~ Letter sent to IL State's Attorney Richard Devine requesting help with insurance coverage for children being treated for Positional Plagiocephaly.

~ Letter sent to U.S. Senator Dick Durban of Illinois requesting the same.

Plagiocephaly & My Banded Boy: Nate's Banding Experience


Positional Plagiocephaly is caused when repeated pressure is applied to one side of the occiput (e.g. the back of the head) and a flat spot occurs.  The side that is flattened will often be accompanied by a prominent forehead.  It is also common to have misaligned ears and facial asymmetry.  Facial asymmetry on the affected side can also include a jawbone that is tilted, and an eye that appears displaced, and mismatched in size. If left untreated, plagiocephaly can lead to a number of medical problems including respiratory and vision problems, migraines, difficulty chewing, TMJ, and sinus complications. 

There are several possible causes of Positional Plagiocephaly.  The most common causes are:  
- In Utero Constraint - restrictions in the womb due to multiples or small pelvis
- Prematurity - cranial bones are soft and easily deform
- Congenital Muscular Torticollis - tightness of neck muscles
- Overuse of seats - car seats, bouncy seats, strollers, and swings
- Back Sleeping & limited Tummy Time - PLEASE continue back sleeping to prevent SIDS

This condition is most commonly seen in infants that have been placed on their backs in car seats, bouncy chairs, strollers, and swings.  I would like Mommies and Daddies to know how important TUMMY TIME and REPOSITIONING are, and to make more people aware of this condition. Alternating sleeping position, changing your child’s orientation to outside activity and use of a front infant carrier (like Baby Bjorn) are just some ways you can help your child. Use of a Boppy Noggin Nest pillow to cradle the child's head can help when used in the bouncy chairs and car seats.

Some children that have Plagiocephaly may have Torticollis. Congenital Muscular Torticollis (CMT), also known as Twisted Neck, is a condition that is usually caused when one or more of the neck muscles is shortened or tightened on one side. This causes the baby’s head to tilt and/or to turn in one particular direction.  If your baby tends to always look in one direction then it is very possible that CMT could be the cause.  If you suspect that your child may have CMT it is important to have it diagnosed by a physician and to have it treated.  Treatment usually consists of physical therapy to lengthen and loosen the affected muscles.

FORMS OF TREATMENT (cited from cappskids.org)
The most common forms of treatment are reposition therapy and helmet or band therapy. Some doctors argue that Positional Plagiocephaly will correct on it’s own as the child grows and becomes developmentally mature, resulting in less time spent on the back.  This can be true in mild cases, but most parents that have children with moderate or severe cases are not willing to take that gamble and opt for treatment.  It is commonly believed that aggressive reposition therapy is best utilized when a child is between the ages of 0-6 months depending on severity of the Positional Plagiocephaly. After six months (or sooner depending on the child), it is much harder to control the side that the baby sleeps on so reposition therapy may not be as affective.  Helmet or band therapy is also best started at an early age, usually around 5 months.  Though some bands and helmets can be used as late as 18 months, effectiveness is greater when the baby is younger.  Because of this, parents along with doctors should make educated decisions based on the individual baby, the baby’s age and the degree of Positional Plagiocephaly and facial asymmetry.  
  
REPOSITION THERAPY
Reposition therapy is simply the concept of repositioning the baby so that he does not rest on the flat spot.  It is believed that by removing the external pressure, the flat area will “round out” as the head grows.  (Before trying reposition therapy it is important that the baby be cleared of Torticollis. If the baby has Torticollis it is important that parents discuss this with the baby’s physician and utilize physical therapy to stretch the neck muscles). 

Some common practices of reposition therapy are placing a rolled up towel or blanket beneath the back of the flattened side to prevent the baby from rolling onto the affected side.  Another common tactic is placing crib toys on the opposite side of the flattening to make the child look in that direction.  Adding supervised "Tummy Time" while the child is awake and playing, is another important part of repositioning.  When tummy time is first introduced to a baby, it is best done is short intervals of only about a minute or two at a time.  As the baby gains muscle control and begins to enjoy tummy time, the intervals can be increased.  This not only has the benefit of allowing an infant to strengthen many muscles that are not used when laying on the back, but it also allows the back of the head to have some time without external pressure pushing up against it.

There are several different methods that can be used for reposition therapy.  A little bit of creativity is also of great benefit in this area.  However, always keep safety in mind and never place an item in the crib that could be harmful.  

CORRECTIVE HELMETS & BANDS
The first corrective device offered for Positional Plagiocephaly was the Molding Helmet. The original molding helmet introduced in 1979 was designed with the basic concept that if you surround the asymmetrical infant head with a symmetrical (normal) mold, the skull will grow into the mold and take on the shape of the mold resulting in a normal shaped head. 

An alternative technique, Dynamic Orthotic Cranioplasty (DOC Band), was subsequently developed as a more proactive approach to treatment of Positional Plagiocephaly.  In this technique, the device was specifically designed to apply gentle pressure to the area of the head where growth was not wanted, while leaving space where growth was needed.  With this technique, the child is seen on a weekly to biweekly basis to have adjustments made to the band to ensure proper growth of the head and optimum correction of the deformity. 

Bands and Helmets come in several different designs but two things that they all have in common is that they are all light-weight and they are all custom made to fit the individual baby’s head.  In order for the band or helmet to be custom fit there must be a casting done of the child’s head.  For more information on the casting process and to see pictures of an actual casting, please visit http://www.cappskids.org/CastingProcess.htm

NATHAN'S DIAGNOSIS
My son, Nathan, was born on 5/20/05 with torticollis and plagiocephaly. During my last trimester, I complained of lower back, leg, and pelvic pain.  At birth, the OB/GYN stated Nathan was lodged behind my pelvis, thus causing his head to be flattened.  I brought up my concern for his head at every doctors visit.  I was told that some babies are born with oddly shaped heads, and there was nothing to be worried about…they would add, “We’ll keep an eye on it”.  At his 2 month visit, I insisted that there was something wrong, his eyes and ears appeared to be misaligned. I was told to try repositioning for a month (which I had already been doing). At Nathan’s 3 month visit, I insisted the pediatrician take a closer look. The Pediatrician called in one of her peers and they decided it would be in Nathan’s best interest if I took him for a CT-SCAN to rule out Craniosynostosis (a premature fusion of one or more skull sutures).  The CT-SCAN came back OK, and the diagnosis was positional plagiocephaly.

Nathan was evaluated at Cranial Technologies for treatment utilizing the Dynamic Orthotic Cranioplasty (DOC band).  Photos and measurements were taken. Nathan was noted as having a trans-cranial vault asymmetry of 16mm – considered severe. I informed my insurance company of medical necessity. My insurance company denied coverage. We decided to go through with the treatment despite receiving the denial (unfortunately, many insurance companies do not cover this treatment).  In Nathan’s situation, being born with this condition, all of the repositioning we had done hadn’t helped.  We were told that his head and face would in fact get worse if we did not use a band or helmet. We had already noticed his jaw was tilted and he had started receiving therapy for his mouth. He also was receiving therapy once a week for the torticollis.

TREATMENT AT CRANIAL TECHNOLOGIES
If going to Cranial Tech, your first visit is the consultation (which is free). The clinician will take measurements and discuss treatment for your little one. They explain the whole process thoroughly.  After the consult, you then decide if you want to go ahead with treatment. Treatment, is on average, $3000 – that is for everything…casting, band, fitting, adjustments, and all clinic visits. For the treatment to begin, you will need an RX or script from your little one’s pediatrician. Cranial Technologies will then help you with the preauthorization process with your insurance company. This may require a letter of medical necessity from your physician, medical photos, measurements, and description of the treatment. The patient coordinators at CT will guide you through this process. Pre-authorization can take as long as 3 weeks. If your insurance company doesn’t approve, like mine, you will need to decide if you want to go through with the treatment. You can always appeal the insurance company's decision after treatment has begun. 

The process begins with a detailed medical history, a photo study of your child, and an exact impression (casting) of the infant's skull, which is custom modified for your child. The DOC band is then made from the corrected model. A precise fit is necessary, followed by closely timed growth adjustments (we go every week for an adjustment, while older babies, over 7 months old, may be seen every two weeks).  The DOC band has to be worn 23 hours a day, with an hour off for cleaning.

The most effective correction period is while the child's skull is still malleable. Ages 3-6 months is the optimal time for treatment, when growth is fast. Correction can take place between 5-12 weeks.  Good results are possible for the older child (12-18 mos), however, correction will take longer due to the slowing of growth.

For more information on Plagiocephaly and Torticollis, please refer to the following links. 

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The information contained in Nathan's website should not be used as a substitute for the medical advice of your physician.
Please contact your physician with any concerns or questions you may have.









BEFORE & AFTER TREATMENT PHOTOS AND MEASUREMENTS





Nathan's Measurements:


Measurements :     Cranial Vault Asymmetry        Mid Face-Asymmetry      Skull-Base Asymmetry
9/6/05                                   16 mm                                      5 mm                              8 mm
11/8/05                                 10 mm                                      3 mm                              6 mm
2/28/06                                   4 mm                                      2 mm                              3 mm
                                   *Normal Range 0-3 mm                          *0-3 mm                           *0-3 mm

                                          Cranial Width                      Cranial Length
9/6/05                                       94 mm                                140 mm
11/8/05                                  102 mm                                 143 mm
2/28/06                                  111 mm                                 151 mm




Nathan's head before treatment
8/05  (3 months old)




Nathan - END OF TREATMENT
5 months of treatment
2/06 (9.25  months old)

 
Nathan's forehead bossing
(right side) before treatment
8/05  (3 months old)





 Nathan's forehead bossing
(right side) END OF TREATMENT
2/06  (9.25 months old)


Nathan's DOC band
First day of treatment
9/05  (4 months old)

 Nathan's decorated
DOC Band 9/05

 
Nathan doing "TUMMY TIME"
10/05  (4.75 months old)







 
Nathan with Mr. Bear
2/06 (8.5 months old)



Nathan doing Yoga Ball exercises
2/06  (8.75 months old)


 

Mirror Mirror on the floor ...




 Nathan band-free
3/06



      
Nathan age 3.5
10/08



        



     

Comments (21)

Cindy Regennitter - Nov 29, 2008 8:11 PM

First Name : Kathleen
Comments : your website is so warm and supportive. I hope your insurance plight has cleared up. My 4 month old son has an appt. with a ped nuerosurgeon next week. Due to large head circumference we were referred there. I am sure he has torticollis and fairly certain

Cindy Regennitter - Nov 29, 2008 8:11 PM

First Name : Dawn
Comments : Thanks for letting me know how this works, love your site. We start our DOC band journey tomorrow at our casting, wish us luck!

Cindy Regennitter - Nov 29, 2008 8:11 PM

First Name : Sherry Tuttle Donnahoo
Comments : I find this very interesting as I am an RN at the Lakes Regional Hospital in Spirit Lake, IA. I will pass on the information to our OB Department. Good Luck and Best Wishes....Sherry Donnahoo

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : patty
Comments : Ross & Cindy, You have a precious baby boy with such big brown eyes.Thinking of both of you & God Bless.

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : DKF
Comments : Nathan is a beautiful little boy! My husband and I are looking into a DOC band for our 9 month old preemie - your website is informative and helpful! Best of luck and love to you and your family...

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : Susan Redmond
Comments : Congrats on such a great result!

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : Grandma Reva
Comments : Congratulations Nathan!! Your Mom and Dad are very responsible and loving to aware themselves of the situation and took the steps needed for you to have total normalcy. OXOXOXO

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : Chris
Comments : He looks great Cindy and Ross. Cant wait to see him again

Cindy Regennitter - Nov 29, 2008 8:12 PM

First Name : Katie
Comments : Nathan is a cutie! Congrats on the upcoming graduation! I know how hard it is to have a child with plagio. Good luck & God Bless.

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Naomi
Comments : I would like to commend you. Plagiocephally is not widely known, yet pretty common. I never heard of it, until I started working at UIC Craniofacial Center. Im glad that there are people in this world like you, helping others, GOD BLESS YOU & YOUR FAMILY.

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Katherine
Comments : Thanks for posting this very informative site. I used to work with a DOC band group through a craniofacial team. Head positioning is so key. I know that youve helped people with your craigslist posting.

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Trisha
Comments : I read your article in the newspaper! Kudos to you! Thanks for educating my family. I have a friend that I will be sending the article to. THX

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Doris
Comments : I read your AD on Ebay. My daughter has a BAD flat spot and I am going to contact my pediatrician about it. Thanks for the advice!

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Dee
Comments : Thanks so much for putting this up.I cant get my 1 month old to turn his head the other way.Now I have a reason to ask his DR w/o feeling paraniod.THANKS AGAIN!

Cindy Regennitter - Nov 29, 2008 8:13 PM

First Name : Bridget
Comments : Hi Cindy! He is adorable!! So glad to see the helmet is working. Your mom just told me about Nathans helmet yesterday. It looks like things are coming along good. I'm glad. Take care, Bridget

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : Gail
Comments : I read your post on craigslist and thought it was very helpful and informative. I am happy to see Nathan is having such good progress in only 3 weeks. Thanks for the information. My sister has a 1 month old and I will pass this your link along to her. Good luck to your family!

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : Dan
Comments : As the parent who ran the auction for ad space on my childs helmet, I feel this is an important message to get out there, and the infomation provided in this site is very effective at doing so! Good job!

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : BRANDY
Comments : MOMMY OF A PLAGIO BABY... GOOD LUCK TO ALL WHO HAVE TO ENDURE THIS CONDITION.

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : Susan
Comments : Thanks for the info! I had never heard of this condition before. I am expecting in January, and will be sure to limit time on my little ones back. THANKS!

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : Geraldine
Comments : I think its so great that youre spreading awareness about this condition. Personally, I have never heard of it. I have a five month old girl so I was very interested. Also, I know now that I wont place her on her back so much during the day. Thanks!

Cindy Regennitter - Nov 29, 2008 8:14 PM

First Name : Kari
Comments : I always find it very interesting to learn about all of these medical things. Its stuff you dont really think about until your face to face with it. Thanks for sharing.