Resource Finder at Kennedy Krieger Institute
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Little Eric Miller* had a rough start in life. Struggling with severe acid reflux from the time he was just a few days old, he spent much of his first few months shuttling from one doctor to another, enduring countless X-rays, CT scans and other tests. Mom Brenda Baker*, desperate to relieve his discomfort, decided to keep him propped up as much as possible, even putting him in his car seat to sleep. She began to notice that his head seemed larger than normal and tilted to the right. Eventually, doctors determined that Eric's head was more than three standard deviations above the norm in size, and that he had significant curvature of the spine.
Beth Slomine questioned her pediatrician for months about the flatness on the left side of her son Matthew Harris' head. He favored that side no matter how hard she tried to encourage him to lie on his right, he'd end up back on his left. Over time, the flatness became more pronounced. Slomine bought a special pillow meant to hold her son's head to the right, but shortly after she began using it, he developed enough control over his movements to scoot off the pillow and roll back to the left. Doctors told her not to worry, that he'd grow out of it.
Ryan Watkins' troubles began when he was born by emergency caesarian. A breech baby, he was born with dislocated hips and a very asymmetrical head. He began physical therapy at three months, but after seven months of therapy he still couldn't lift his head.
Although these situations are unique, all three boys had conditions that should benefit from Kennedy Krieger's newest program, the Cranial-Cervical Clinic. Designed to treat abnormal shape and flatness of the head, called plagiocephaly, and asymetrical positioning of the head, called torticollis, the clinic combines the medical expertise of a physician specializing in rehabilitation with treatment by pediatric physical therapists.
Kennedy Krieger has treated these conditions for many years, but never in a dedicated, coordinated setting. "Working together offers an advantage," says Dr. Melissa Trovato, medical director of the new program. "As a physican, I might recognize another condition that is affecting a child, while the physical therapists might pick up on something different in terms of how the neck is positioned."
Physical therapist Diane Nemett, who, with colleague Tara Diel, leads the program's physical therapy component, agrees. "Parents might bring their child to us because they are concerned about head tilt," she says. "But in the course of a comprehensive evaluation, we could recognize another neurological problem that needs broader attention. When that happens, there's a large network of Kennedy Krieger specialists we might be able to refer them to."
Occurrence rates for plagiocephaly vary widely, anywhere from one in 300 births to 48%. Torticollis occurs in 0.4% to 3% of babies. Both conditions, which can occur together or independently, are markedly more common in babies from multiple, premature or breech births. While some babies develop difficulties because their cranial bones fuse together too soon, most of the time the conditions are "positional" in nature, caused by external forces that put excessive pressure on one area of the head. The pressure can come from the baby's position in utero, during birth and/or from positioning after birth.
Although babies with torticollis or plagiocephaly usually follow a normal course of development, early identification and treatment are important to minimize asymmetries, which can lead to facial deformities. There is a slightly increased association of hip dysplasia with torticollis, and if the asymmetries are not treated, babies are more likely to develop scoliosis. "When the head position is off from the get-go," says Nemett, "it affects the child's ability to shift weight throughout the rest of his or her body." As a result, babies with torticollis may crawl and stand later than their peers.
Head tilting caused by torticollis can also affect a child's vision. "How your head is positioned has a big influence on your visual perspective," Dr. Trovato says. "There's an inherent attempt to get your eyes horizontal, so if the head tilts and the eyes are not horizontal, the body tries to compensate for that. Over time, the eye muscles can weaken to try to correct the asymmetry."
Much of the reasoning behind the creation of the Cranial-Cervical Clinic stems from the growing number of children developing these disorders. Research indicates there has been a six-fold increase in positional plagiocephaly since 1992, when the American Academy of Pediatrics launched "Back-to-Sleep," a program designed to teach parents to place babies on their backs for sleeping to prevent Sudden Infant Death Syndrome (SIDS). Since then, the incidence of SIDS has declined by 40%, so there is no question that babies should sleep on their backs unless otherwise advised by their pediatrician. However, with the development of car seats that double as carriers, bouncy seats and other devices, babies are spending much of their awake time on their backs. There's a chance that near-constant pressure and support on the back of the head will create flattening and weaker neck and back muscles.
"Families often don't realize that they are putting babies on their backs for 23 out of every 24 hours," says Tara Diel. "The back-to-sleep campaign is a good thing, but our clinic is going to emphasize the importance of supervised tummy time' when the baby is awake." Placing babies on their stomachs encourages them to develop the muscles needed to lift their heads and strengthen their backs and arms.
While the team plans to incorporate an awareness campaign to help prevent positional plagiocephaly and torticollis, an important focus will be working with families whose babies are already showing signs of the conditions. Initial evaluations will involve both Dr. Trovato, who will review the baby's medical and developmental history, and one of the physical therapists. The team will make recommendations for ongoing physical therapy and referrals to other specialists when necessary. Parent coaching on positioning and handling techniques designed to promote symmetry will also be included. In the coming months, the Clinic plans to add a behavioral optometrist to help children with torticollis learn to move, align, fixate and coordinate their eyes.
There are many resources available for treating the asymmetries created by these conditions. Physical therapy techniques may involve using range of motion exercises to stretch and loosen the child's neck, positioning to promote symmetry and relieve pressure on the head, developmental handling to promote symmetrical movement patterns and strengthening, manual therapy to mobilize structural restrictions, kinesiotaping to help balance muscles and orthotic devices for support. Many of these techniques can be incorporated in the home. In addition to these methods, Diel and Nemett both have extensive experience in osteopathic physical therapy, often referred to as cranial-sacral therapy. The therapy uses a light, rhythmic touch to gently mobilize the bones of the skull, spine and pelvis.
The therapy can make a dramatic difference in a very short period of time. When Beth Slomine first brought Matthew to see Nemett, the occipital bone at the back of his head was clearly far to the right. After just three or four weeks of cranial-sacral therapy, she says, the bone was almost completely centered. The last time measurements were taken, the discrepancy between one side of his head and the other was just 2 millimeters. Despite all the progress Matthew has made, Slomine wishes he'd gotten therapy earlier, before the problem became so pronounced. "I don't think most pediatricians refer children for treatment for plagiocephaly early enough," she says. "But clinics like this will be able to treat the problem early on and prevent more significant difficulties." Now 19 months old, Matthew is doing well.
For Brenda Baker, the greatest advantage in working with Nemett was the change in her son's attitude towards his treatment. Between stressful tests and treatments for his acid reflux and uncomfortable therapy suggestions for his torticollis, Eric had developed a great fear of doctors and therapists. That changed when he met Nemett, whose therapy routines were easy to incorporate into the family's lifestyle. "Eric's first physical therapist focused only on stretching his neck, and wanted us to repeat the maneuvers as often as 40 times a day," says Baker. "Diane turned the therapies into games that were fun for Eric. She checks his whole body, and considers things like how his acid reflux might be affecting his alignment." Today, at not quite three years old, Eric's head still tilts slightly when he's tired or not feeling well, but many times his head looks completely straight.
According to Candy Watkins, Ryan showed significant improvement by the end of his first session with Nemett. "It was amazing," Watkins says. "At 10 months, he had never been able to lift his head up. He did it within a single session." Shortly before beginning cranio-sacral therapy, Ryan also began using a device called a Doc-band, a plastic helmet that helps mold the shape of a baby's head.
Because using a Doc-band requires bi-weekly visits to its manufacturer's headquarters in Virginia, not all families feel comfortable using it. But for the Watkins it made a tremendous differerence. "Ryan continued physical therapy until he was almost two, but I'd say he improved about 85% from using the Doc-band," says Watkins. Ryan just turned four. According to Watkins, his face is much more symmetrical now, and she can't see a difference in the level of his ears anymore. The Clinic plans to facilitate referrals for Doc-bands when appropriate for families interested in that type of therapy.
In addition to providing comprehensive patient care, the team Cranial-Cervical Clinic team plans to use its coordinated resources to advance research projects exploring the causes, effects and best treatments for plagiocephaly and torticollis. Dr. Trovato, Nemett and Diel hope increasing awareness of how plagiocephaly and torticollis develop will lead parents and other medical professionals to recognize the conditions earlier and seek treatment as soon as possible. Many of these problems can be avoided simply by adjusting a baby's position which is much easier to control early in infancy and may prevent the development of undesirable compensations. When malformations do occur, they are much easier to correct during a child's first year. "Although older children can be helped with intervention," Nemett says, "It's critical to get kids referred earlier."
* Name changed at family's request