This excellent guest article was written by Laura Steinmann, of Steinmann Prosthetics and Orthotics in Las Cruces, NM. She has been kind enough to share her experience working in the field of plagiocephaly and cranial remolding orthoses (helmets) with parents and caregivers in this article.
I encourage everyone dealing with plagiocephaly and brachycephaly to read it. She discusses the use of helmets for treatment, what causes these conditions and why they are so misunderstood, the possible consequences for children with this condition, and what health care professionals should be doing about it.
Many thanks to Laura for this very helpful information!
Disclaimer: I am not an expert, and these ideas as well as the interpretation of the studies I reference, are mine and not necessarily my husband’s or even the author’s :). It is my belief, as a nurse and parent, that “Forewarned is Forearmed” and I hope this is helpful information.
I’ve been a Registered Nurse for 35 years. I started work with my husband, an orthotist/prosthetist, in 2011 and learned about recent research in plagiocephaly and about cranial remolding orthoses (CRO). He uses the Orthomerica STARscanner 3-D Laser Acquisition System to determine cranial measurement, and I help with collecting and reporting the measurement data. Pediatricians refer their patients to us for cranial scans, which are free of charge, and we consider this a service to our community. We are conservative and do not necessarily want to put a helmet on a child. If appropriate we provide the parent with information on repositioning techniques.
About 40-50% of parents along with their physician choose to proceed to a CRO. There is a lot of work involved. The STARscanner is a FDA Class 1 Medical Device, and CRO are Class 2 Medical Devices. According the FDA, CRO are appropriate for ages 3-18 months, so the child must be within this range and able to tolerate a helmet. We require that the parents must be in agreement with each other and the physician. Parents must be willing to comply with the treatment regime and be motivated. Over 4 or more months, there are between 8-12 office visits for CRO adjustments, and 2-3 more comparison scans. We do not charge for office visits. Parents and caregivers must adhere to a rigorous helmet wear schedule of 23 hours/day with 1 hour off for bath and to clean the helmet. The physician must rule out craniosynostosis, and one insurance provider requires a pediatric neurologist exam. Insurance must provide authorization, and that can take time. According to FDA guidelines, helmets must be applied within 14 days of a scan, otherwise the child will need another scan because they grow so quickly. It takes work, but we have a high percentage of good results with CRO. As we learn more about head shape dysmorphology, we try to keep our colleagues and parents abreast of new research.
Head shape deformities in general, and deformational plagiocephaly (DP) in particular, are not well understood by those healthcare providers and payers who classify this as a minor cosmetic issue or the result of positioning practices, and who do not recognize the need for intervention. Too often, parents and caregiver who ask these providers about their child’s “flat spot” are brushed off, told “wait and see,” “don’t worry about it,” “it will fix itself,” or “no one has a perfect head.”
In my sample of insurance policies (UnitedHealthCare, Aetna, HealthNet, BCBS and more), most approve cranial remolding orthoses (CRO) if criteria are met, but still prefer to regard plagiocephaly as a cosmetic issue, and commonly use the term positional or acquired plagiocephaly. From a parent point of view, positional implies that the condition can be avoided; they may assume guilt and feel “blamed” because they allowed their child to acquire the condition, which is not helpful. As communication expert Dr. Louis Rossetti says, Parents are always looking for a hook to hang their guilt on. I prefer the term “deformational plagiocephaly” (DP) (Littlefield, Kelly) because I think the term “positional” does not serve the best interests of families, and it may lack veracity given the body of evidence suggesting that there are multiple contributing factors.
Environmental factors do not explain all cases of plagiocephaly, and not all head shape deformity can be alleviated by repositioning techniques. There is evidence that genetic factors play a part (Lin). Between the cranial bones are sutures and fontanelles. Hormonal growth factors in cranial sutures, which help transform osteoblasts in to bone, affect skull growth. Some evidence shows these growth factors can be “turned on” from prolonged pressure in one position, which means that repositioning techniques are still important, however basically these factors are inherited, so that individual infants will have differing responses. This may partially explain why some children develop DP and others do not.
Lin KY, Nolen AA, Gampper TJ, Jane JA, Opperman LA, Ogle RC. Elevated Levels of Transforming Growth Factors Beta 2 and Beta 3 in Lambdoid Sutures from Children with Persistent Plagiocephaly. Cleft-Palate Craniofacial Journal. July 1997, Vol 34 No 4, pp 331-337.
Peer-reviewed research studies from around the world have established relationships between DP, developmental delay and functional problems (see research studies by Clarren, Kennedy, Speltz, Kordestani, and others). I don’t imply that all children with DP will have developmental delay, and certainly don’t want to scare parents. Most of the children we see with DP do not have a developmental delay. DP is individual and we cannot know who will or will not have a problem, so we should be alert to the potential and encourage early intervention as needed. There is also evidence-based research demonstrating a link between DP and functional problems. DP is associated with orbit asymmetry which may cause visual functional deficit or visual field problems (Siatkowski). DP is associated with elevated risk of cortical auditory processing disorders as measured by auditory event-related potential (Balan, Fellman). DP can affect temporo-mandibular symmetry, and malocclussion can affect oral health (Mulliken, Netherway, Kane, Ubertalli). Even US insurance policies now acknowledge “limited clinical evidence suggests that DP may be associated with future ocular and/or oral abnormalities.”
Dr. Bruce Collett at Seattle Children’s Hospital demonstrates that children with DP and accompanying developmental delay, still have the delay at age 36 Months. He thinks some children may have a pre-existing neuro-developmental vulnerability that puts them at risk to develop DP, so it results from a congenital problem and is not necessarily caused by positioning or extrinsic factors. He suggests that DP may actually be an early “marker” in some cases for potential developmental delay before children can be tested using other methods. Children are usually screened for developmental delay starting around 9 months, but DP is apparent well before 6 months. This is one reason it is important to have all DP evaluated, and he recommends early intervention.
Collett BR, Gray KE, Starr JR, Heike CL, Cunningham ML, Speltz ML. Development at Age 36 Months in Children With Deformational Plagiocephaly, Pediatrics Dec. 2012.
We encourage all pediatric health care providers to start integrating “head shape surveillance” in to their practices. Starting with newborns and at each well-child visit, evaluate the cranium for areas of bossing (forehead, orbit, cheek, vertex), misalignment (ears, nose, jaw), and flattening (forehead, parietals, occiput). Examine the neck for torticollis which is associated with plagiocephaly (as are hip dysplasia and and scoliosis). DP is time-sensitive and best outcomes are achieved when the condition is identified and treated early.
Steinmann Prosthetics and Orthotics
3885 Foothills, Suite 1
Las Cruces, NM 88011