Cerebral palsy (CP) is the most common motor disability in childhood, according to Capute and Accardo’s Neurodevelopmental Disabilities in Infancy and Childhood. Babies born prematurely, or with very low birth weight, are at higher risk of developing CP, as compared to normal birth weight babies delivered at term, according to TK.
The term “Cerebral Palsy” has Latin and Greek origins. The word “cerebral” comes from the Latin word for brain. The word “palsy” comes from the Greek word for paralysis, which literally means “loosen,” from the word paralyein, and its roots para (beside) and lyein (to loosen or untie). Children with cerebral palsy often have a muscle weakness or abnormality caused by brain injury.
A Look Inside the Brain
How does the baby’s brain become injured? Brain injury can occur any time after conception, and can even occur after birth, as the brain is forming in childhood. Some children acquire brain injury after trauma, or infection, and this can cause CP. Other children have signs and symptoms of CP that are evident as early as six months of age. Most neurologists and developmental pediatricians will not diagnose CP until the age of three years, although infants and toddlers with delayed milestones may be suspected of having cerebral palsy.
After birth, most babies start to develop skills that we all love: eye contact, funny facial expressions, laughter, giggling, reaching, and grabbing, rolling over, sitting, and more so that at each stage (3 months, 6 months, 12 months, 18 months and 2 years) most parents and pediatricians, pediatric neurologists and pediatric neurosurgeons, know what to look for and expect. But sometimes, babies do not meet their expected milestones; what then?
Talk to Your Pediatrician
The first step is always having a discussion with your pediatrician. Write down your concerns. If you see abnormal activities like shaking, twitching, arching…take a video to show your doctors. If your child is “always toe-walking” and cannot stand flat footed, take a video or picture. Your baby may be referred to a developmental pediatrician, neurologist or pediatric physical therapist (PT). All those specialists can help identify and treat developmental delays. However, the diagnosis of CP usually does not come from one missed milestone, but rather a constellation of signs and symptoms.
Children may have neurological examinations, genetic tests, imaging studies of their brains and/ or spinal cords, and electroencephalograms (EEGs) done to help determine if there are any concerns, and if so, how to best treat the problem. As a pediatric neurosurgeon, I am often asked to look at ultrasounds of the brain, CT scans and MRI’s of the brain, to help localize where the problem is coming from.
Once a child has been diagnosed with CP, treatment would be started in many areas, depending on what the individual child needs.
More Than Just a Diagnosis
Children with CP can have anywhere from mild to severe symptoms, depending on the cause of their brain damage. Treatment usually starts before age three with physical therapy, bracing or orthotics and occupational and speech therapies, if needed. Children with CP can also have other neurological problems such as ADHD, fine motor delays, social difficulties, sensory integration disorder, gastrointestinal problems, poor emotional regulation, low frustration tolerance and sleep problems. Children with CP are like all children, and can develop anxiety, autism, tics, learning disabilities, anxiety, depression, substance abuse, oppositional defiant disorder or bipolar disorder. That’s why it’s imperative to look at all the child’s symptoms. Becoming overly fixated on just CP symptoms can sometimes obscure the coexistence of other symptoms or disorders. Treating the whole child requires addressing all his or her problems, not just one.
There are usually multiple specialists involved in caring for kids with CP: the pediatrician, the pediatric neurologist, developmental pediatricians, physiatrists, pediatric PT, occupational therapists (OT) and speech/ language and feeding therapists. Pediatric neurosurgeons, orthopedic surgeons and epileptologists are called to consult for some, but not all, children with CP. Endocrinologists, nutritionists and psychologists also may be involved in caring for children with CP. The bottom line is that each child is different and requires an individualized care plan and team to provide that child with their best possible outcomes.
Not all toe-walking means CP! Many children toe-walk, in fact, many infants start toe-walking and then outgrow this habit. But persistent toe walking may indicate a developmental, sensory integration, or motor development problem in a child. The initial referral is usually for PT, and then sometimes, orthopedics for foot or ankle braces. Sometimes, a referral to a rehabilitation medicine doctor, or a physiatrist, is made. Sometimes the physiatrist or neurosurgeon will inject botulinum toxin (yes…Botox) into the calf muscles to allow the child to walk more normally. The Botox helps to relax the calf muscles, so that PT can be more effective. Botox takes effect 3 days after injection and usually lasts 3 – 6 months. If after several sessions of Botox, a child is still toe walking, then orthopedic surgeons may do a tendon lengthening, or a neurosurgeon may do a rhizotomy, a procedure that involves cutting some of the sensory nerves that cause tightness. In most cases, toe walking is correctable without surgery.
Spasticity and CP
For children with CP, weakness is often a problem. But sometimes, their muscles are weak but tight, or spastic and they cannot extend their legs and arms properly. If untreated, this muscle condition can cause contractures, or shortening of the tendons, that can permanently deform muscles and joints and cause skin breakdown, pain, weight loss, and immobility. Spasticity and muscle tightness are treatable with physical and occupational therapy, oral medications and sometimes medications delivered by a drug pump. For children where oral medications and Botox shots have failed to permanently loosen up the muscles, the medication pump or the rhizotomy are common pediatric neurosurgical procedures that permanently reduce muscle tone, tightness, and contractures. Certainly, all procedures, and even Botox injections, are always associated with risk, but these risks are usually acceptably low. If untreated, children with spasticity often end up non-ambulatory with severe bone and joint deformity.
Why Children with CP are Often Too Skinny and Too Constipated
What we put into our bodies certainly affects our brains. Children with CP often do not eat enough. Their muscles are very often always working, cramping, and tight. Their basal metabolic rate is much higher than that of children without spasticity and CP. Very often, kids with CP also have constipation. They can’t drink enough water and they can’t run or walk enough to get their intestines “moving.” Additionally, some of the medications that we physicians use to treat seizures or spasticity, if given orally, also slow down the gastrointestinal system and make constipation worse. Constipation and weight loss are some of the big issues that my CP patients have to contend with.
Vitamins and Supplements
There are several vitamins and supplements that may help with some symptoms of CP. Supplements such as omega-3-fatty acids have been helpful. In addition, children with CP may be at increased risk of vitamin deficiencies. As such, blood work may be useful in identifying these deficiencies. Before trying any vitamins or supplements, be sure to speak with your physician. When purchasing supplements, you should also note that not all supplements are created equally. Supplements with third-party certification and independent testing are preferred. Please speak with a pediatric nutritionist or pediatric neurologist about your child’s needs or concerns.
And Yes, Surgery
Every child’s situation is unique; the family and the physician need to have a thorough discussion prior to surgical intervention. Children with CP may benefit from orthopedic surgeries such as tendon lengthening, de-rotational bone osteotomies (cutting), plating, and/ or scoliosis surgery. Neurosurgical procedures such as Botox injections, medication pumps and rhizotomies are also helpful for children with medication resistant muscle tightness. Children with CP and seizures often are helped by implanted electrodes or grids that help track, reduce and/ or control seizures. Podiatrists are sometimes needed for foot surgeries. Children with CP and fluid buildup in their brain (hydro-cephalus) are often treated with shunt tubes, to drain the fluid, and lower pressure in the head.
A modern approach to the child with CP should clearly have an approach that is whole child. While medication may be a part of the solution, so may surgical interventions, behavioral and physical support and therapy, vitamins, and dietary changes. If your child has been diagnosed with CP or you suspect that your child may have CP, you should seek out a specialist that understands and implements such a whole-child approach.
Dr. Catherine Mazzola is a board-certified Pediatric Neurosurgeon at New Jersey Pediatric Neuroscience Institute (NJPNI). She completed her Pediatric Neurosurgical Fellowship at the University of Pittsburgh in 2002 and did her residency at New Jersey Medical School. Dr. Mazzola’s special interests include cerebral palsy, the management of movement disorders such as dystonia and spasticity, hydrocephalus, traumatic brain injury and concussion, pediatric brain tumors and spine tumors, brain cysts, craniofacial surgery, plagiocephaly, torticollis, Chiari malformation, spina bifida, spine deformity, and epilepsy. Dr. Mazzola is the founder of the Craniofacial Center and Spasticity and Gait Disorder Center at Goryeb Children’s Hospital, and the Pediatric Brain and Spine Tumor Center (now called GNOP). She is involved in mentorships for pre-medical undergraduates, medical school students, and residents. Dr. Mazzola published several peer-reviewed articles, presented at national neuroscience meetings, and received grants from the Children’s Pediatric Brain Tumor Foundation and The New Jersey State Cancer Commission. Dr. Mazzola is repeatedly listed in Inside New Jersey “Top Docs” Magazines and voted by parents as a New Jersey Family’s “NJ’s Favorite Kids Docs.”