I started
the plagiocephaly.information
website (first as plagiocephaly.org in 1999) to
inform parents and healthcare givers about plagiocephaly and to provide
parents with the contact information for physicians who were familiar
with
plagiocephaly and
craniosynostosis. By 1999,
I had been involved
in craniofacial research for 16 years—initially, at the Cleft Palate
Center at the University of Iowa, Iowa City, Iowa, and later, at the
Advance Surgical Institutes at Medical City Dallas Hospital in Dallas,
TX.
I become involved with the treatment of plagiocephaly in 1992 while a
research scientist at Medical City Dallas. At that time, surgery was
the only accepted treatment for
plagiocephaly. In addition,
plagiocephaly was often mistaken for
craniosynostosis—craniosynostosis
can only be corrected with surgery. Consequently, infants were
undergoing very invasive cranial surgery procedures for a
plagiocephaly.
In 1992, I was asked to evaluate a new non-surgical treatment for
treating
plagiocephaly (the
DOC Band).
I was extremely skeptical—I knew that
cranial orthoses had been tried before without much success. However,
I
quickly saw (with my own eyes) remarkable correction of severely
misshapen heads. Later, I was fortunate to be involved in some of the
research that documented the efficacy of treatment by cranial orthosis.
[This research was requested by the FDA. You can find these [Kelly et
al., 1999a;
1999b] and
other scientific
publications in the resources
section of website.] Fortunately, it is now widely recognized that
plagiocephaly can be treated without surgery.
Since 1999, the website’s mission has expanded to include information
about other abnormal head shapes (generically thought
of as flat head syndrome). In addition, now that the
plagiocephaly (and
brachycephaly) has gained
wide recognition among the medical community,
I’m working on ways to
promote prevention and encourage coverage of orthotic by medical
insurers. In addition, I provide websites for Parent's
Plagio Support and
parents of children with torticollis
as well as a website listing links to craniofacial support groups at
CranioSupport.com.
What are the most important things for parents
to know about positional plagiocephaly?
It is important for parents to know that
plagiocephaly can often be prevented and/or corrected by
repositioning. In addition,
parents should know that, if treated early (prior to 18 months of age—as
young as possible), this condition can be effectively corrected without
surgery. Having made those points, it also critical that parents know
that if they have concerns about the shape of their child’s head, they
should seeks medical advice to rule out other conditions (for example,
torticollis or
craniosynostosis) that
require other forms of intervention, perhaps even surgery.
What do you see as the possible consequences
of not treating positional plagiocephaly?
Left untreated, children,
especially those deformity includes facial asymmetry may experience
other medical issues later in life (for example, problems with the TMJ, temporomandibular joint; problems with occlusion). In addition,
one should not [cannot] understate the importance of simply “looking
normal” to a child’s emotional and social development, particularly
as children grow into their teens.
My daughter
just starting wearing the cranial band (helmet) 3 days ago, although
they say a baby will adjust to it quickly and does not hurt them, it's
still hard on me as a mom to put her through this. My question is: "Is
this going to hurt her mental development is any way, will it cause any
kind of brain damage or anything else and will it affect the growth of
her hair?"
You have raised one of the concerns that had to addressed before
the DOC
Band would be approved by the FDA. [The DOC Band was the first
FDA-approved cranial
orthosis.] The study demonstrating that cranial
growth is not restricted (in other words, the brain has room to
grow) was published in "Pediatric Neurosurgery" in 1999 and is
available on-line [Kelly KM, Littlefield TR, Pomatto JK,
Manwaring KH, Beals SP (1999)
Cranial
growth unrestricted during treatment of deformational
plagiocephaly. [pdf file] Pediatric
Neurosurgery, 30: 193-199] along with articles on the
The Pediatric Neurosurgery study is cited in most, if
not all subsequently approved cranial helmets applications.
If you are using an FDA approved cranial orthosis (helmet/band)
with proper monitoring by a trained orthotist, there should be no
need to worry about the device affecting your child's brain
development.
Concerning growth of her hair...
I would expect some temporary hair
loss. But it should be only temporary.
My cranial specialist told me that our child is 3 standard deviations
from the norm. What exactly does this mean?
Standard deviation is a measure of
the amount of variation (or deviation) that might be expected
between the actual value and the expected value (for example,
head
circumference,
cranial
length,
cranial width, cranial
index). When the clinician takes a measurement, the expected
value is the population mean (average). [The expectation is that the
child is average (the NORM).]
Given an expected value and its standard deviation, it is possible
to say how likely an actual value is. From statistics there is a 68%
chance that the actual value will be either one standard deviation
above or one standard deviation below the expected value or +/- 1
standard deviation. It also works out that there is a 95%
chance the actual value will be within +/- 2 standard deviations and
a 99.7% chance the actual value will be within +/- 3 standard
deviations of the expected value.
There is always some small chance the actual value can be any
several standard deviations from the expected value, but usually the
actual value will be within 2 standard deviations of the expected
value (in other words, a 95% chance). That's why scientist generally
say a difference is significant if p<0.05 (in other words, the
probability is less than 5% -- outside the range of 2 standard
deviations).
A child whose measurements are 2 (or more) standard deviations
from the norm is outside what is generally considered to be normal
variation (in other words, NOT normal).
When they say "premature
fusion" of the sutures in the newborn skull, how early is too early
for them to fuse? At what age do they normally fuse together?
The skull grows in response to the growth of the brain. The skull
grows rapidly from birth to 2 years of age when the brain reaches
about 95% of its size. After 2 years of age, the skull continues to
grow slowly until about 7 years of age.
The sutures commonly involved in
craniosynostotic
deformities normally begin to close in the third decade of life
(i.e., in your 20s: sagittal suture, 22 yrs of age; coronal suture,
24 yrs of age; lambdoid suture,
26 yrs of age).
The premature closures that lead to
craniosynostoticplagiocephaly,
brachycephaly or
scaphocephaly generally
occur in the first year of age. So when you physicians talk about
"premature closure", they mean about 20 years too early.
The
information provided on this web site, although based on a
thorough and careful review of the medical literature, is
for educational purposes only and is not intended as a
substitute for the medical advice of physicians. The reader
should consult a physician in matters relating to health and
particularly in regards to any symptoms which may require
diagnosis or medical attention. Neither the author nor the
publisher shall be responsible for any harm or injury
resulting from interpretations of the materials in this
site.
