Category Archives: Treatments and Therapies

Physical Therapy Basics, Rights and Cautions

By Lee Vander Loop

Some children with cerebral palsy require physical therapy. Some don’t. Once the diagnosis is made, and the type of cerebral palsy is determined, a team of health care professionals will work to identify specific impairments and needs, and then develop an appropriate plan to address the core disabilities that affect the child’s quality of life.

Physical Therapy is a branch of medicine directed at the rehabilitation of muscles and the muscular skeletal system.  Physical therapy helps improve mobility, and uses a variety of equipment and exercises to help patients achieve or improve abilities. There is no standard therapy that works for every individual with cerebral palsy.

Children who require physical therapy will be referred to a private therapy group and, when they’re older, also receive physical therapy at school. Therapists who work with children are called Pediatric Physical Therapists, and are accredited through the American Physical Therapy Association.   Physical therapy programs use specific sets of exercises and activities to work toward two important goals: preventing weakening or deterioration of the muscles that aren’t being used (disuse atrophy), and keeping muscles from becoming fixed in a rigid, abnormal position (contracture).  Early detection and management of muscular problems is crucial in early childhood development.  If left untreated, muscular issues where cerebral palsy is concerned can lead to contractures and long- term debilitation, compromising your child’s ability to walk, bend, dress, and possibly degrading a child’s quality of life long term.

  • Physical therapy, usually begun in the first few years of life or soon after the diagnosis is made, is a cornerstone of cerebral palsy treatment.
  • Resistive exercise programs (also called strength training) and other types of exercises are often used to increase muscle performance, especially in children and adolescents with mild cerebral palsy.
  • Daily exercise routines keep muscles that aren’t normally used moving and active and less prone to wasting away.  Exercise also reduces the risk of contracture, one of the most common and serious complications of cerebral palsy.

Children normally stretch their muscles and tendons as they run, walk, and move throughout the day.  This insures that their muscles grow at the same rate as their bones. But in children with cerebral palsy, spasticity prevents muscles from stretching.  As a result, their muscles don’t grow fast enough to keep up with their lengthening bones.  The muscle contractures that result can set back the gains in function they’ve made.  Physical therapy alone or in combination with special braces (called orthotic devices) helps prevent contractures by stretching spastic muscles.

What Parents Need to Know

  • Not all children with cerebral palsy require physical therapy
  • Although vital in some cases,  physical therapy alone may not be adequate in preventing contractures and complications of some movement disorders
  • In the case of severe spastic cerebral palsy, the maximum benefits of physical therapy can only be realized when the muscle spasticity is addressed and reduced to the extent possible
  • With cases of Ataxic or Athetoid cerebral palsy, physcal therapy is a vital tool in addressing muscle strengthening and range of motion issues.

Your Child’s Rights

You and your child have the right to certain expectations. The Model Practice Act for Physical Therapy developed by The Federation of State Boards of Physical Therapy addresses the standards, rules, regulations and patient consumer rights in regard to physical therapy.

  • Team approach –When working with your child’s physical therapist you should be made to feel like a part of a team.  It is a team approach between you, your primary care physician, the therapist and your child.
  • CommunicationYour child’s physical therapist should be communicating openly with you as to what they are doing, what muscles they are working with and why they are taking the approach they have chosen.  You should also expect the therapist to communicate to your child.  Most young children are anxious and fearful with strangers.  The therapist should be working and communicating with your child to win your child’s trust and confidence.  Regardless of whether your child is capable of comprehension or capable of communication, the therapist should be communicating with your child and treating your child with respect, patience and compassion. If you meet a therapist that treats your child like an object and not a human being, find another therapist.
  • Teaching – Your child’s physical therapist is not only working with your child but should also be teaching you so that you can be consistent in your child’s care and contribute to help your child achieve and maintain goals in the absence of the therapist.

Questions to Ask

  • Communication works both ways.  You should be communicating any concerns and questions you have to the therapist.  If necessary, keep a journal and note problems and challenges you see your child may be experiencing between therapy sessions
  • Ask the therapist what you can do between therapy sessions to help your child maintain any progress realized
  • Ask how often you should work with your child and the duration of each session
  • If your child has been prescribed adaptive equipment, inquire as to how often you should use the equipment and the duration of each session
  • Ask about what adverse side effects you should be aware of. For instance, in the case of adaptive or custom orthopedic equipment, AFOs, wheelchairs, standers and similar equipment, you should watch for any chaffing, pressure sores or skin break down indicating that an adjustment needs to be made.

Compassion and Patience

  • You have the right to expect compassion and patience from your child’s therapist.  If you feel a therapist is being overly aggressive and seems to be traumatizing your child… STOP THEM.
  • The term “No pain, No gain” DOES NOT apply to children with cerebral palsy.  Effective physical therapy should not be painful.  If a therapist is being overly aggressive and causing pain, this is contradictive and will result in your child relating therapy to pain.

Accountability

  • Your child’s therapist should have written goals.  You should be provided with the results of the first assessment and goals the therapist hopes to achieve in addressing issues and challenges your child may be experiencing.
  • In the case of Range of Motion (the extent to which a muscle/limb can be extended) the therapist should do periodic measurements to assess your child’s range of motion, and provide you with goals for improvement and notify you of progress or regression. Perhaps your child has contractures of his/her lower extremities and a range of motion of 60%. The therapist should provide you with goals for achieving a higher percentage of range and a time line for achieving those goals.

Coordination

  • You have the right to expect your child’s therapist to work and coordinate with your child’s educators in developing your child’s Indepedent Education Program (IEP)and to be an active member of your child’s  IEP team.
  • In the case of a private physical therapist not associated with your child’s school, your child’s therapist should be communicating with your child’s educators and involved in the IEP process to ascertain that the goals created are being worked on in your child’s educational setting.
  • The therapist should also be coordinating and communicating with your primary care physician in obtaining physician’s orders for any needed adaptive equipment or devices and should keep the physician informed of your child’s progress or challenges.
  • If the therapist feels your child would benefit from custom made orthopedic shoes (AFOs), or other adaptive equipment, it’s the responsibility of the therapist to communicate with the physician the need and to followup in acquiring custom equipment/devices deemed medically necessary.

Continuity of Care

  • You have the right to demand, and the therapist has an obligation to provide, continuity of care in relation to your child’s therapy. Continuity of care means the same therapist works with and follows your child through out the duration of the therapy process until your child either no longer needs the therapy and has reached set goals, or it’s determined that your child has achieved the maximum benefits of the therapy.
  • If your therapist belongs to a group and you’re finding they send a different therapist with each session, tell them this is not acceptable and if necessary, change agencies.

BE AWARE – Controversial physical therapies

Not all forms of physical therapy are considered effective for children with cerebral palsy.

  • “Patterning” is a physical therapy based on the principle that children with cerebral palsy should be taught motor skills in the same sequence in which they develop in normal children.  In this controversial approach, the therapist begins by teaching a child elementary movements such as crawling — regardless of age – before moving on to walking skills. Some experts and organizations, including the American Academy of Pediatrics, have expressed strong reservations about the patterning approach because studies have not documented its value.
  • Experts have similar reservations about the Bobath technique (which is also called “neurodevelopmental treatment”), named for a husband and wife team who pioneered the approach in England .   In this form of physical therapy, instructors inhibit abnormal patterns of movement and encourage more normal movements. The Bobath technique has had a widespread influence on the core physical therapies of cerebral palsy treatment, but there is no evidence that the technique improves motor control.  The American Academy of Cerebral Palsy and Developmental Medicine reviewed studies that measured the impact of neurodevelopmental treatment and concluded that there was no strong evidence supporting its effectiveness for children with cerebral palsy.
  • Conductive education, developed in Hungary in the 1940s, is another physical therapy approach that at one time appeared to hold promise.  Conductive education instructors attempt to improve a child’s motor abilities by combining rhythmic activities, such as singing and clapping, with physical maneuvers on special equipment.  The therapy, however, has not been able to produce consistent or significant improvements in study groups.

Spastic Cerebral Palsy – Facts, Treatments, and Outcomes

By Lee Vanderloop

Spastic cerebral palsy is the most common form of cerebral palsy, occurring in 50-75% of all cases. People with spastic cerebral palsy have too much muscle tone or tightness, a condition called hypertonia. Their movements are stiff and jerky, especially in the legs, arms, and back.

Sometimes an infant born with weak muscle tone, called hypotonia, will progress to hypertonia after the first 2 to 3 months of life. Children with cerebral palsy may exhibit unusual posturing or favor one side of the body when they move.

Up to 80% of all people with cerebral palsy suffer from some degree of spasticity. Spastic cerebral palsy is further categorized by what parts of the body are affected. In spastic diplegia, the main effect is found in both legs. Spastic hemiplegia involves one side of the person’s body. Spastic quadriplegia affects a person’s whole body (face, trunk, legs, and arms).

A person can have spastic cerebral palsy so mild that walking can simply look awkward, or be so severe that the use of a wheelchair is required.

Causes of Spastic Cerebral Palsy

According to the National Institutes of Health, four types of brain damage cause the characteristic symptoms of cerebral palsy:

  • Damage to the white matter of the brain (periventricular leukomalacia [PVL]). The white matter of the brain is responsible for transmitting signals inside the brain and to the rest of the body. Periventricular leukomalacia describes a type of damage that looks like tiny holes in the white matter of an infant’s brain. These gaps in brain tissue interfere with the normal transmission of signals. There are a number of events that can cause PVL, including maternal or fetal infection. Researchers have also identified a period of selective vulnerability in the developing fetal brain between 26 and 34 weeks of gestation. During this time, periventricular white matter is particularly sensitive to injury.
  • Abnormal development of the brain (cerebral dysgenesis). Any interruption of the normal process of brain growth during fetal development can cause brain malformations that interfere with the transmission of brain signals. The fetal brain is particularly vulnerable during the first 20 weeks of development.  Mutations in the genes that control brain development during this early period can keep the brain from developing normally. Infections, fevers, trauma, or other conditions that cause unhealthy conditions in the womb also put an unborn baby’s nervous system at risk.
  • Bleeding in the brain (intracranial hemorrhage). Intracranial hemorrhage involves bleeding inside the brain caused by blocked or broken blood vessels. A common cause of this kind of damage is fetal stroke. Some babies suffer a stroke while still in the womb because of blood clots in the placenta that block blood flow. Other types of fetal stroke are caused by malformed or weak blood vessels in the brain or by blood-clotting abnormalities. Maternal high blood pressure (hypertension) is a common medical disorder during pregnancy that has been known to cause fetal stroke. Maternal infection, especially pelvic inflammatory disease, has also been shown to increase the risk of fetal stroke.
  • Brain damage caused by a lack of oxygen in the brain (hypoxic-ischemic encephalopathy or intrapartum asphyxia). Asphyxia, a lack of oxygen in the brain caused by an interruption in breathing or poor oxygen supply, is common in babies due to the stress of labor and delivery. But even though a newborn’s blood is equipped to compensate for short-term low levels of oxygen, if the supply of oxygen is cut off or reduced for lengthy periods, an infant can develop a type of brain damage called hypoxic-ischemic encephalopathy, which destroys tissue in the cerebral motor cortex and other areas of the brain.    This kind of damage can also be caused by severely low maternal blood pressure, rupture of the uterus, detachment of the placenta, or problems involving the umbilical cord.

 

How Movement is Affected

The type of brain damage that leads to cerebral palsy affects movement. Movement is governed by muscle tone, which is the continuous and passive amount of tension in a muscle that allows us to change or keep certain postures.

Healthy muscles work in groups. For example, when you bend your arm, the group of muscles on the front of your arm contract and the muscles on the back of your arm relax, which is what allows the bend to occur. Except in deep sleep, our muscles are in a constant state of active or passive tension, which allows us to do things like sit up, raise our heads, or stand.

Our brain sends out signals to muscles telling which ones to contract and which to extend to make our movements smooth and controlled. When any movement occurs, there are two sets of muscles working around a joint. Normally, the muscles on one side of the joint must relax so that the muscles on the other side can contract. In people with spastic cerebral palsy, the brain activates muscles at the same time, causing muscle groups to work against each other. The result is stiff, jerky movements.

Symptoms of Spastic Cerebral Palsy

Brain damage can occur before an infant is born, during labor and delivery, or when a child is older as the result of illness, accident, or injury. If the damage occurred before or during birth, an infant might have low APGAR scores, floppy muscle tone, poor color, weak breathing, the inability to suck, and development of seizures. In less severe cases, brain injury may not be obvious until the child fails to meet developmental milestones. In most cases, children with cerebral palsy are diagnosed by age three. Your child’s physician may order a brain scan or MRI for the diagnosis of cerebral palsy. This study may show lesions or other possible suspected causes of spastic cerebral palsy.

Following are some symptoms of spastic cerebral palsy in children:

Contractures-Contractures are “frozen joints,” and occur when a limb cannot be stretched or moved (when another person tries to moves it about its joint). Contractures may develop because the muscles were shortened or wasted away (atrophy), or from the development of scar tissue (fibrosis) formed over the joints.

Clonus –Clonus is a movement characterized by rapid, alternate contractions and relaxations of a muscle. Clonus is frequently observed in conditions such as spasticity and certain seizure disorders. A child with spastic cerebral palsy may experience episodes of clonus when trying to walk or navigating stairs. Clonus may cause the child’s foot to move up and down uncontrollably or shake erratically. In the case of clonus involving the arms, an attempt at controlled movement may trigger rapid, violent tremors or shaking of the arms and hands, sometimes leading to violent scissoring of the arms, possibly banging of the fists together.

Dystonia-Dystonia is a movement disorder characterized by lasting muscle tightening or contractions. The contractions result in repeated twisting or writhing movements and unusual postures or positioning that the person with dystonia cannot control. This disorder may be limited to specific muscle groups and may result from the use of certain medications.

Exaggerated deep tendon reflexes-Knee jerk and other reflexes may be exaggerated.

Exaggerated startle reflexes and hypersensitivity-Infants may seem particularly sensitive to their environment, such as noise and light. They may seem especially sensitive to touch, startling easily and becoming fussy when stroked or held.

Hip dysplasia and dislocation-Hip dysplasia and dislocation is a common feature of cerebral palsy. The hip joint is normal at birth but the spastic muscle imbalance and lack of weight bearing leads to the development of progressive structural changes around the hip joint. These deformities contribute to hip dysplasia and dislocation. The consequences of a hip dislocation include difficulty with toileting and hygiene and result in problems with sitting.

Myoclonus-Myoclonus is a neurological movement disorder characterized by brief, involuntary, twitching or “shock-like” contractions of a muscle or muscle group. Depending on its cause, the muscle jerks can occur repeatedly or infrequently. They also may tend to occur only during specific circumstances. The muscle jerks can affect any body region or regions.

Muscle spasms or scissoring-Involuntary crossing of the legs or arms.

Categories of Spastic Cerebral Palsy

Spastic Diplegia-Spastic Diplegia is spastic cerebral palsy that may involve both legs, causing difficulty with walking due to tight muscles in the hips and legs causing legs to turn inward and cross at the knees (scissoring).

Spastic Hemiplegia-Spastic hemiplegia affects one side of the body. In the brain, one hemisphere (side) controls the opposite side of the body. So, if the left side of the brain experiences damage, the symptoms will appear on the right side of the body and vise versa.

Spastic Quadriplegia-Spastic quadriplegia is spastic cerebral palsy that involves all four limbs and the trunk, often along with the muscles controlling the mouth and tongue and also those controlled by the autonomic system responsible for swallowing, gastric emptying, and intestinal motility. This is the most severe form of spastic cerebral palsy.

Treatments

Treatment for spastic cerebral palsy focuses on controlling excess tone and spasticity by means of medication, surgery or spinal cord stimulation, alleviating pain, and providing regular physical therapy. Failure to control excess tone and spasticity to the extent possible can lead to contractures, scoliosis, and hip dysplasia, and it may severely impact quality of life.

Common Medications

  • Benzodiazepines–A class of medications that act upon the central nervous system to reduce communication between certain neurons, lowering the level of activity in the brain. Benzodiazepines are muscle relaxants such as diazepam, oral baclofen, and dantrolene and are frequently the first line of treatment in managing movement disorders.
  • Intrathecal baclofen–Approved by the Food and Drug Administration (FDA) in 1996 for treatment of cerebral palsy, this therapy is becoming the common choice of treatment in movement disorders that do not respond well to other forms of treatment. This form of therapy uses an implanted pump device to deliver baclofen (muscle relaxant) into the spinal cord. This form of therapy is most appropriate for children with severe hypertonia and uncontrolled movement disorders throughout the body.

 

Surgery

  • Orthopedic surgery is often recommended when spasticity and stiffness are severe enough to make walking and moving difficult or painful. Commonly, surgery involves lengthening muscles and tendons that are proportionately too short. Orthopedists generally time surgeries to coincide with a specific stage of the child’s physical development.
  • Spasticity in the upper leg muscles, which causes a “scissor pattern” walk, is a major obstacle to normal gait. The optimal age to correct this spasticity is 2 to 4 years of age with adduction release surgery. On the other hand, the best time to perform surgery to lengthen the hamstrings or Achilles tendon is 7 to 8 years of age. If adduction release surgery is delayed so that it can be performed at the same time as hamstring lengthening, the child will have learned to compensate for spasticity in the adductors. By the time the hamstring surgery is performed, the child’s abnormal gait pattern could be so ingrained that it might not be easily corrected. With shorter recovery times and new, less invasive surgical techniques, doctors can schedule surgeries at times that take advantage of a child’s age and developmental abilities for the best possible result.
  • Selective dorsal rhizotomy (SDR) is a surgical procedure recommended only for cases of severe spasticity when all of the more conservative treatments have proven ineffective. In this procedure, surgeons locate and selectively sever over-activated nerves at the base of the spinal cord to reduce spasticity in the legs.

 

Spinal Cord Stimulation

Spinal Cord Stimulation was developed in the 1980s to treat spinal cord injury and other neurological conditions involving motor neurons. This procedure involves an implanted electrode, which selectively stimulates nerves at the base of the spinal cord to inhibit and decrease nerve activity. The effectiveness of spinal cord stimulation for the treatment of cerebral palsy has yet to be proven in clinical studies. It is considered only when other conservative or surgical treatments have been unsuccessful at relaxing muscles or relieving pain.

Deep Brain Stimulation

Deep Brain Stimulation involves placing thin wires through tiny holes in the skull into the area of the brain that controls movements. The leads are then connected to a device called a neurostimulator. The device sends electrical pulses or signals to areas deep within the brain. These signals block the abnormal nerve signals causing the symptoms of dystonia. Research hospitals such as Children’s Hospital of Pittsburgh and the University of California, San Francisco have reported benefits for children with cerebral palsy from deep brain stimulation.

Botox Injections

A growing body of research supports the use of Botox injections for easing spasticity in children with cerebral palsy. However, the FDA has not approved Botox for this purpose because of possible dangerous side effects. A board certified neurosurgeon should administer this treatment, which gives only temporary relief.

Outcomes

The prognosis for those with spastic cerebral palsy depends on the severity of the spasticity and the nature and severity of the brain damage. Spastic cerebral palsy does not always involve seizures or profound disabilities, developmental delays, or learning disabilities. While one child with severe spastic cerebral palsy might be developmentally delayed and unable to walk and need lifelong care, another with mild cerebral palsy might only have a few awkward movements, exhibit no developmental delays, and require no special assistance.

The degree of spasticity can vary from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms, and can interfere with rehabilitation. It can often interfere with daily activities and may also result in feeding, swallowing, speech and oral motor difficulties, as well as disrupted or increased muscle tone of the gastric and intestinal muscles, putting a child at risk of reflux (Gastro esophageal reflux disease – GERD) and delayed gastric emptying. Unchecked, spasticity can severely impact a child’s physical and cognitive development.

Some children may require only augmentative communication and adaptive equipment to be active and functional, while others may require a lifetime of therapy, surgeries, and medications. Children with severe spastic cerebral palsy may also be at increased risk of aspiration pneumonia and scoliosis. Depending on the severity, a child may also be diagnosed with “failure to thrive” because of the high amount of energy and calories the body uses in cases of chronic spasticity.

Spastic cerebral palsy provides life-long challenges. But with the help of medications, therapy and continuing advancements in medical care, it can be managed to provide the fullest life possible. For more information and support for families dealing with cerebral palsy, go to www.cpfamilynetwork.org.

Resources:

National Institute of Neurological Disorders and Stroke Spasticity Information Page.

Cerebral Palsy Family Network

Eating Problems Stressful but Treatable

By Lee Vander Loop
CP Family Network Editor

When my first daughter was born, she exhibited a total absence of any type of oral motor skill and necessitated a feeding tube from birth. Her birth injuries occurred as a result of “cord complications of unknown origin.”

When our second child was born with cord complications, my husband had orders from me (even before the delivery) not to leave our new baby’s side until he could assure me that she was neurologically fine. My husband kept his word and remained inseparable from our daughter, even when the staff discouraged his presence as she was transferred to the pediatric ward and isolette. After he was able to do his own visual assessment, he reported back to me that as soon as she stuck her fist in her mouth and he heard that sucking sound, he felt confident that she was fine. That same child was recently awarded a Bachelor’s Degree in Biology. Not all incidents of birth trauma result in cerebral palsy, just as not all incidences of cerebral palsy result in feeding disorders.

There’s nothing worse than an infant or child with eating problems. It is constant, daily stress for both child and caregiver. Moreover, eating issues are serious and need immediate intervention and treatment. Fortunately, a lot is known about eating problems and treatments are available.

 

Causes and Symptoms

When cerebral palsy does result from birth injury, in the same way it may affect cognitive or gross and fine motor abilities, it can also impact oral motor function.  Muscles in the jaw, mouth, tongue, lips and cheeks are designed to work in harmony in the movement, breaking down and ingesting of foods and fluids. The same impulses that trigger “hypertonia” or “hypotonia” in the extremities can also impact oral muscles in the same way.

Damage to cerebral pathways or portions of the brain responsible for the impulses that facilitate oral skills can result in a variety of feeding disorders and oral motor dysfunction. Dysphagia is the term used to describe problems with swallowing.

  • Following are signs and symptoms of feeding and swallowing problems in very young children:
  • Arching or stiffening of the body during feeding
  • Irritability or lack of alertness during feeding
  • Refusing food or liquid
  • Failure to accept different textures of food (e.g., only pureed foods or crunchy cereals)
  • Long feeding times (e.g., more than 30 minutes)
  • Difficulty chewing
  • Difficulty breast feeding
  • Coughing or gagging during meals
  • Excessive drooling or food/liquid coming out of the mouth or nose
  • Difficulty coordinating breathing with eating and drinking
  • Increased stuffiness during meals
  • Gurgly, hoarse, or breathy voice quality
  • Frequent spitting up or vomiting
  • Recurring pneumonia or respiratory infections
  • Less than normal weight gain or growth

 

Sucking at Birth

Many children with cerebral palsy experience some degree of oral motor dysfunction. This may first become apparent in a diminished ability or total lack of ability to suck at birth. A study conducted by Children’s Hospital of Philadelphia assessing sucking behavior of preterm neonates as a predictor of developmental outcomes affirmed that sucking performance at 40 weeks Post Menstrual Age (PMA ) was significant in terms of predicting development mental status one year later.

Since PMA is not a well-known term, I’ll explain. Postmenstrual age is the time elapsed between the first day of the last menstrual period and birth (gestational age) plus the time elapsed after birth (chronological age). Postmenstrual age is usually described in number of weeks and is most frequently applied during the perinatal period beginning after the day of birth. Therefore, a preterm infant born at a gestational age of 33 weeks who is currently 10 weeks old (chronological age) would have a postmenstrual age of 43 week.

In other words, if your baby isn’t sucking normally by several weeks after birth, it’s important to talk to your doctor.

 

Feeding Tubes

A baby who can’t take in enough nutrients to stay well-nourished may need to be fed by way of a tube. The benefits of tube feeding, also called enteral feeding,  include better growth and nutrition, improved hydration, improved bowel function and consistent medication. It can also greatly free the family from anxiety and improve quality of life for both care givers and the child.

There are also disadvantages. If the child has gastroesophageal reflux, aggressive enteral feeding may increase his or her risk of aspiration or vomiting. Other physical disadvantages are diarrhea, skin breakdown or anatomic disruption. Mechanical disadvantages include a dislodged or plugged up feeding tube. Metabolic risks include blood sugar and bone density issues.

Tube feeding can be short-term or long-term, depending on many factors. Most children receiving enteral feedings can continue to receive oral feedings to fulfill the pleasurable and social aspects of eating. All infants and young children require oral-motor stimulation for developmental reasons.

Doctors will make a decision about whether a child needs to be tube fed based on the following factors:

  • Inability to consume at least 80% of energy needs by mouth
  • Total oral feeding time more than four hours per day
  • Weight loss or no weight gain for a period of three months (less for younger children and infants)
  • Weight for height (or length) less than 5th percentile for age and sex
  • Triceps skinfold less than 5th percentile for age
  • Serum albumin less than or equal to 3.0 g/dl

That said, my research on the topic uncovered a 2011 study of a systematic review of medical literature about tube feeding versus oral feeding in children with cerebral palsy. The study noted some risks and benefits of both, but concluded that there’s not much documented information in medical circles about whether one is better than the other and more clinical trials are needed. So, as in all cases involving medical decisions around cerebral palsy, parents need to do their homework and keep asking questions.

Here are some of them:

1. Are there reasons why tube feeding shouldn’t be done? (For example, the family lives too far from local hospitals in case of complications. The caregiver isn’t in a position to learn or carry out necessary procedures.)

2. Are there medical conditions that need to be addressed first? (Such as gastroesophageal reflux, risk of aspiration)

3. Where will the tube be inserted? (stomach, duodenum, or jejunum)

4. What is the plan for oral-motor stimulation after the tube is inserted?

Eating and swallowing problems may improve as the child grows, with time, and with treatment. Feeding with a tube and be discontinued with no ill effects. However, a decision to stop tube feedings requires the same careful planning that went into the decision to start it.

 

Therapy

Some children may experience some degree of difficulty but not serious enough to warrant a feeding tube. A child may exhibit sensitivity to different textures and consistencies, or the temperature of a food substance, i.e., cold vs. hot, but not experience swallowing or speech difficulties. A child may be able to swallow but have difficulty with speech, chewing or moving food around in their mouth. There may be drooling and exhibit an inability to manage oral secretions requiring suctioning or medication. With children diagnosed with spastic cerebral palsy, the tightness of the muscles (hypertonia) may cause the tongue to constantly push to the palate, making oral motor skills, swallowing and speech all but impossible.

Children with any of these problems benefit greatly from speech therapy and occupational therapy services, and the attention of a speech language pathologist.

 

Treatment

Depending on evaluation and testing, there are a number of treatments available for children with eating and swallowing problems. These range from total tube feeding to speech and nutritional therapy. The treatment plan should be decided jointly by the primary care physician, the caregiver, a speech-language pathologist and a nutritionist. Following are some of the treatment options:

  • Medical intervention (e.g., medicine for reflux)
  • Direct feeding by tube
  • Nutritional changes (e.g., different foods, more high calorie food)
  • Changes in posture or position to enhance feeding

Therapists can also work with your child on the following:

  • Strengthening mouth muscles
  • Strengthening tongue movement
  • Improving chewing
  • Accepting different foods and liquids
  • Improving sucking and/or drinking ability
  • Coordinating the suck-swallow-breath pattern (for infants)
  • Altering food textures and liquid thickness to ensure safe swallowing

 

Resources

The Mayo Clinic

MedlinePlus

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