Urge Congress to Fund Cerebral Palsy Research

Cerebral palsy affects more children than muscular dystrophy, multiple sclerosis, cystic fibrosis or childhood leukemia. But CP receives only a fraction of the government research funding these other disorders receive. I wish I knew why. I only know it isn’t right.

Not that these organizations deserve any less research support. I just believe cerebral palsy should warrant more attention. In the U.S., 1 in every 303 eight-year-olds has cerebral palsy. The odds are 1 in every 270 among African-American children. Yet, the cause of 80% of CP is still unknown.

I work with families of children with cerebral palsy on a regular basis. I know what kind of challenges they face, and what it costs to provide children with the kinds of therapies and services they will need the rest of their lives. I present these numbers in courts and around settlement tables. I am well aware that science has not found a way to prevent most cerebral palsy, or to cure it.

Without more research funding, it is unlikely this will occur anytime soon, which is a travesty. Dedicated research funding is practically nonexistent, according to the Academy for Cerebral Palsy and Developmental Medicine. The Centers for Disease Control and Prevention (CDC) has no specific funding for CP, and funds dedicated for CP by the National Institutes of Health (NIH) (only $22million for this year) is not for innovative, curative research, the academy notes.

Today is National Cerebral Palsy Awareness Day. Do your part to urge Congress to dedicate more funding to preventing, curing and developing effective therapies for cerebral palsy. Contact your elected officials. The 800,000 Americans who are living with CP today are counting on you.

For more information about the causes of cerebral palsy, read my blog “Your Child’s Cerebral Palsy: Preventable Mistake or Not?“

Let’s Talk About Cerebral Palsy Myths

In acknowledgement of National Cerebral Palsy Awareness Day on March 25, I wanted to talk about some common CP myths: children with cerebral palsy are mentally disabled, will never walk or talk, can never live independent lives, and developed cerebral palsy from an unknowable and unpreventable neonatal condition.

The thing about myths is that they originate in a grain of truth. Although cerebral palsy, by definition, is a disorder that affects motor function, some children with CP also experience damage to the part of the brain that controls thinking. They suffer from lifelong cognitive disabilities. Others, because of the extent of damage to the area of the brain that governs movement, will need a walker or wheelchair to get around, and may need technical aids to help with speech.  And yes, the reason why some children develop CP is never determined.

But, the bigger truth about cerebral palsy is that it is a disorder characterized by a range of function, from mild to severe. Many children with CP are very bright. I read a story recently about Mike Berkson, a college student with CP who compares himself to a blind man: his lack of one sense has given him heightened capabilities in other areas; in his case, diminished motor capacity has led to heightened mental acuity. Berkson, while confined to a wheelchair, has made headlines with his insights into friendship and living as a person with disabilities.

By far the most common challenge faced by a child with CP is learning to walk, and then to walk with a steady gait. But many do, to the extent that you wouldn’t know they were ever impaired. This goes for talking, too. Just Google “famous people with cerebral palsy” and you’ll find a long list of actors, authors, artists and comedians.

The last great myth about cerebral palsy is that it is never the result of doctor, nurse or hospital error.  According to the medical community, the origin of cerebral palsy is mostly a mystery, but never anyone’s fault. This argument becomes full-throated when it comes to evidence that labor and delivery staff misinterpreted tracings from an Electric Fetal Monitor (EFM) showing the fetus was in trouble and failed to take the required action.

I regularly disprove this myth and others in court. (You can read more about this issue in my article “How Electronic Fetal Monitoring Can Prevent Cerebral Palsy” that first appeared in CP Magazine.) I present evidence that shows if a doctor or nurse had followed approved medical procedure, a lack of oxygen to the fetus and brain injury would not have occurred and the child would not have cerebral palsy. A winning verdict or settlement provides the family with the money they need to care for a brain-injured child the rest of his or her life, which is the fair and just outcome.

Join me in cerebral palsy “myth busting” this week. Wear a green ribbon to show your support of the cerebral palsy community.

Howard Janet has been representing plaintiffs in complex civil litigation for more than 30 years in the areas of medical malpractice, birth injuries, “whistleblower” lawsuits, and environmental litigation. Best Lawyers in America® honored him as the 2012 Lawyer of the Year–Personal Injury, Baltimore, MD. READ FULL BIO

When Raising a Special Needs Child, Keep it Fun!

By Denise D. Aggen

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When someone becomes a new parent, having a healthy and happy child is the first thing on their mind. Being a parent of a child with cerebral palsy can sometimes make a parent question themselves or their abilities to raise someone with special needs. I know when I became a parent at the age of 21, I thought maybe I had done something wrong in my life to be given a child with cerebral palsy. It was not until a stranger told me that I was not being punished, but I was actually chosen to be this special child’s parent because I was also the special one. I was going to be the rock for this child and help them become the best that they could be. Looking at my baby at that time, I saw no disabilities; I only saw her love for me.

Appreciate the Little Things in Life

My daughter has taught me to appreciate the little things in life. Many parents take for granted the different skills that a child learns as they develop, such as putting on their socks, or brushing their teeth. In my house, if my daughter learns a new thing, we celebrate with a happy dance with a lot of hooting and hollering. It takes a lot for someone who has cerebral palsy, depending on the case, to learn a new task or skill.

Currently, I am trying to get my daughter to stay in her own bed all night long. Now mind you, she is very cute coming into my room in the middle of the night with her little doll in her arm and her pillow in the other saying, “Mommy, I had a bad dream. Can I sleep with you?” That is just so precious. I need to be strong and put her back into her room and be stern with her, because a good habit is much easier for her to learn than a bad habit is to break.

Make It Fun

When trying to teach your child with cerebral palsy a new skill or task, make it fun for them. Create a calendar with a box full of stickers that they can pick from when they reach their goals. Go shopping together to pick out the calendar or the materials to make a calendar. Let them pick out the different stickers that they will be using to put on their special calendar. This will be a great treat for them and this will help them become even more excited to reach their goals.

In our house, my daughter can put a sticker on the calendar when she goes potty on the toilet, when she brushes her teeth and when she stays in her own bed all night. After so many stickers, she can choose from a list of prizes, such as going shopping for a new doll or new clothes. Everyone likes to have something to look forward to, and it can be exciting and fun for everyone in the family. Make it fun and enjoy the little things in life.

About the Author

Denise D. Aggen is the proud mother of two and an avid blogger. She writes both a personal blog and a blog called A Parent’s Precious Moments, which chronicles her life as the parent of a child with cerebral palsy. 

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Navigating the World in a Wheelchair

By Crystal McClure

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One of the greatest challenges an individual with a disability faces is the issue of accessibility. Even today, there are still many places that are not fully accessible to those with disabilities; specifically those who use wheelchairs. Wheelchair-friendly establishments continue to be the exception rather than the rule.

Accessibility in the Home

As a child, I was often unaware of how often my wheelchair made it difficult for me to visit certain places. My parents did everything they could to ensure that my wheelchair did not cause me to be left out of many life experiences. They made modifications where necessary so places and things were accessible. My dad built ramps into our house so I could enter and exit the house on my own. When I reached my teen years, he made sure the bathroom was modified so I could do things on my own. Each time my grandfather built a new home for himself and my grandmother, he always made sure that I could get through all doors and hallways inside the house. I am very grateful to my family for always keeping an eye out for accessibility issues, whether in the home or out in public.

When I became an adult and had the privilege of purchasing my own home, only minor modifications had to be made. A ramp was installed to allow me to enter and exit. My dad installed a new high rise toilet so I would be able to use the bathroom without the need for a toilet chair over the commode at all times. This has made living on my own so much easier.

Challenges of Public Restrooms

Often, one of the biggest frustrations for those who use wheelchairs is public restrooms. During my childhood, my mother had to lift me on and off the toilet. Most times we would use a regular stall, which meant the door would not shut because of my wheelchair. This made me very nervous and I would hold it or not be able to use the restroom even though I really needed to go.

Many times, public restrooms are not big enough to accommodate larger-than-average wheelchairs, and in some cases, are not even designed to accommodate a regular size chair. This has been my experience in restaurants and hotels. Just as when I was a child, I have been in restaurants where my wheelchair barely fit into the stall and I could not close the door. When faced with this obstacle, I request to speak to the manager and am often told the restroom meets the required code.

While I understand public places meet code by having the handrails and a wider stall, that does not always mean that it is accessible for someone in a wheelchair. In my personal experience, the handrails are of no use to me as they are up too high and too far away from the toilet. When I do try to use them, I end up pulling my wheelchair under them instead of being able to pivot my body as needed. This has also caused me to jam my knees under a toilet paper holder.

Another issue I have with restrooms is my wheelchair sliding across the floor when I transfer. I have fallen many times because of this. It is very difficult to transfer when the toilet is standard height. Hotel showers are also not wheelchair accessible in many cases. This means that unless the person has someone with them who can lift them safely in and out of the bathtub, they have to sponge bathe and wash their hair in the sink.

Simple Steps to Improve Wheelchair Accessibility

There are some things that can be done to help improve accessibility for wheelchairs in public restrooms. First, persons building the restroom should make sure the stall is big enough to accommodate any size wheelchair and even scooters. Next, place rubber non-skid mats in front of the toilets. This will help secure the wheelchair into place so that it does not roll out or away from the user when he or she is transferring. Finally, all toilets in handicap stalls should be higher than a standard toilet. This will also help with the ease of transferring and reduce the chance that a handicapped person will fall.

Often times, the main door to the restroom is heavy and difficult to open in a wheelchair. I have been in some restrooms where the main door had a push button for opening. This would benefit accessibility for the disabled in all restrooms. If these steps were taken to ensure accessibility for those in wheelchairs, more issues such as these would likely be noticed and addressed.

Speak Up

As the caregiver of a child with a disability, you have the right to speak up and bring accessibility issues to the attention of management. Do not be afraid to be that voice your child needs you to be! As they say, it only takes one person speaking up to make a change. So, let’s speak up and see a change made for the benefit of the wheelchair community.

Have you or your child had frustrating experiences with wheelchair accessibility? Do you have any creative solutions or suggestions? Let us know in the comments!

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Cerebral Palsy Forum Launch!

We are so excited to launch our new cerebral palsy forum, specifically designed to give the community a place to ask and answer questions about CP. Please take some time to sign up and share this important resource. Thank you all so much for being the community you are. Now go out there and keep spreading that positive vibe and amazing information!

http://www.cpfamilynetwork.org/cerebral-palsy-forum

Speech Therapy: Vital To Opening a Child’s World

By Lee Vander LoopCP Family Network Editor

Years ago, before the invention of augmentive communication devices, children who displayed an inability to communicate were assumed to suffer from severe developmental disabilities and treated as such.

Imagine the heartache and frustration of a child with sound cognitive abilities or mild to moderate learning disabilities trapped in their body as a result of their inability to communicate. Augmentive communication devices have opened doors and given new lives to many individuals, providing a means of speech communication for those who would otherwise have no means of expressing themselves and their needs. Thankfully, speech therapists and augmentive devices are common today and can help most any child communicate in some way with the world around him or her.

The Basics of Speech Therapy

Speech therapy is the treatment of communication disorders, regardless of the origin. Therapists that work in the field of communication disorders are known as speech therapists and speech-language pathologists. Therapy can consist of a series of exercises and drills to strengthen the muscles involved in speech, and improve oral motor skills needed for speech as well as swallowing. Speech therapy may also include sign language and the use of picture symbols or augmented and alternative communication devices.

Many children with cerebral palsy experience some level of challenge with speech. Their challenges could be due to cognitive delays as in the case of mental retardation and learning disorders, or may be the result of damage to the area of the brain that facilitates speech. The speech center of the brain is referred to as the Broca’s area and is located in the left side of the brain for right-handed and most left-handed people. Nerves from the Broca’s area lead to the neck and face and control movements of the tongue, lips, and jaw.

Children learn speech from parroting what they hear in their environment. Children with hearing disabilities also experience challenges with speech because they cannot clearly hear sounds they and those around them are making. Children with cerebral palsy and speech challenges also commonly suffer from feeding disorders. Therapy to strengthen speech muscles also greatly benefits eating and swallowing.

Issues Involving Specific Types of Diagnosis

With children diagnosed with spastic cerebral palsy, muscle tightness (hypertonia) may cause the tongue to constantly push up against the roof of the mouth, or palate, making speech all but impossible. Children diagnosed with hypotonia (low muscle tone) likewise would experience challenges with speech, since the muscles of the mouth and tongue work together to form sounds.

The tongue is the primary organ involved in speech. It is also the primary organ of taste, chewing and swallowing. In chewing, the tongue holds the food against the teeth; in swallowing, it moves the food back into the pharynx, and then into the esophagus when the pressure of the tongue closes the opening of the trachea, or windpipe. It also acts, together with the lips, teeth, and hard palate, to form word sounds. Early intervention in this area is vital to a child’s development.

What to Expect From Your Child’s Therapy/Therapist

Communication-Your child’s physical or speech 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. In the case of oral motor and swallowing skills, your child’s therapist should take every precaution to minimize the risk of choking and aspirating.

You should also expect the therapist to communicate with 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 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 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.

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 their progress.

• Ask how often you should work with your child and the duration of each session.

• If your child has been prescribed adaptive or augmentive equipment, inquire as to how often you should use the equipment and the duration of each session.

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. Effective therapy should not be traumatizing. 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. The therapist should do periodic assessments and provide you with goals for improvement and notify you of progress or regression on a regular basis.

Coordination-You have the right to expect your child’s therapist to work with your child’s educators in developing your child’s Individual 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, he or she should be communicating with your child’s teachers and involved in the IEP process to make sure everyone is working toward the same goals.

The therapist should also be coordinating and communicating with your primary care doctor about any needed adaptive equipment or communication devices, and should keep the doctor informed of your child’s progress or problems. If the therapist feels your child would benefit from a specific communication device or piece of adaptive equipment, it is their responsibility to communicate the need to the physician and to follow-up in obtaining the device.

Continuity of Care-You have the right to demand continuity of care for your child. This means that the same therapist works with and follows your child throughout the therapy process. Of course, this isn’t always possible, but it should be the goal of any agency you work for. If your therapist belongs to a group or agency and they are sending a different therapist with each session, find another agency. This is not acceptable.

Visit our website!

http://www.cpfamilynetwork.org

References

Scienceclarified.com

National Speech/Language Therapy Center

Health Science

Physical Therapy Basics, Rights and Cautions - Cerebral Palsy

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 theAmerican 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 Therapyaddresses 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.
• Communication – Your 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.

Seizures and Cerebral Palsy

By Lee Vander Loop
CP Family Network Editor

As the parent of 4 grown children, one of whom has spastic quadrapalegia cerebral palsy, I feel like I’ve experienced my share of parental stress and fears of raising 4 children and dealing with the challenges of maintaining the best quality of life possible for my daughter with CP.

I’ve experienced the heart stopping moment of having my 3rd born not recognize me after a concussion and a multitude of other parental trials and worries, but nothing could prepare me for watching my daughter with cerebral palsy experience her first grand mal seizure also known as tonic-clonic seizures.

No training, literature, insight or experience can prepare you for the heart stopping, gut wrenching experience of watching your child suffer through a seizure. Whether it be the first seizure or 50th, they all feel like the first with the overwhelming sense of fear, helplessness and frustration that comes with the inability to stop your child’s suffering.

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures or epilepsy have cerebral palsy. Additionally, although learning disabilities are common with children who experience seizures, not all children who suffer with seizures experience learning disabilities.

Depending on the severity of the trauma and cerebral injury, infants who suffer injury due to a birthing trauma may experience seizures immediately after birth. In the case of my daughter who suffered severe global cerebral insult as a result of neonatal asphyxia, she experienced 3 days of uncontrollable seizures immediately after birth.

What is a Seizure

Seizures differ, depending on which portion of the brain is involved. Nerve impulses are constantly being transmitted from brain cells and processed by neurotransmitters. Seizures occur as a result of abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of these excess impulses reach skeletal muscle fibers and trigger the violent contractions witnessed with a variety of seizures.

Groups of Seizures

Focal Seizures occur in only one part of the brain or one hemisphere. Generalized seizures occur in both hemispheres of the brain.

Atonic Seizures are characterized by sudden loss of muscle tone, particularly in the lower extremities, often resulting in falls which puts the individual at risk for head injury and other physical injuries.

Generalized Tonic-Clonic Seizures also known as generalized convulsions or grand mal seizures are commonly seen with cerebral palsy.

Tonic Seizures spread throughout the brain, and are normally followed by unconsciousness, twitching legs and arms, convulsive body movements, and loss of bladder control. A child may bite their tongue during such a seizure. The “tonic phase” of these seizures is characterized by sudden muscle contractions and rigidity (hypertonia/spasticity).

Clonic Seizures – Involves recurring and coordinated jerking movements involving both sides of the body as well as rhythmic contractions of the affected muscle groups and violent and extreme gross motor movements. I’ve had the misfortune of witnessing a tonic-clonic seizure with my daughter. She was literally vibrating across the bed with the convulsive gross motor involvement.

Complex Seizures – Involve involuntary but possibly coordinated movement such as lip smacking, chewing and abnormal oral motor activity. With my daughter I called these “birdie seizures”. The oral motor involvement she exhibited involved repeatedly opening and closing her mouth, bringing to mind a baby bird in a nest waiting for food.

Myoclonic Seizures – Characterized by sporadic jerking movements, usually involving both sides of the body, that may progress to violent gross motor convulsive movements.

Partial (focal) Seizures are confined to one part of the brain and may be simple or complex. Partial (focal) seizures result from electrical impulses from one part of the brain and are usually a motor or sensory seizure that is restricted to one side of the body. The individual remains conscious. However, if the seizure progresses to a more generalized seizure, a loss of consciousness will occur.

Petit mal (absence) Seizures – Also known as Absence Seizures with this type of seizure a child may appear to be “staring off into space”, and will be unresponsive to stimulation or their environment. I’ll never forget the “vacant stare” my daughter exhibited the first time I saw one of these seizures. It was obvious, even to me, that something was wrong. I had never witnessed such a seizure. These seizures don’t pose the same hazard some seizures do, but they can put a child at risk of aspiration if they occur while a child is eating.

Fever (febrile) Convulsions- Febrile seizures are convulsions brought on by a fever in infants and small children. During the seizure a child may lose consciousness accompanied by tremors or shaking. A majority of febrile seizures are harmless and there is no evidence to suggest that they cause brain damage. However, children who have experienced febrile seizures that are lengthy or that recur within 24 hours or children with cerebral palsy are at greater risk of developing epilepsy.
The National Institute of Neurological Disorders and Stroke (NINDS) provides a comprehensive online fact sheet on Febrile Seizures, provides a detailed and informative description of this type of seizure as well as information on diagnosis and treatment.

Simple Partial Seizures - Cause muscle twitching, chewing movement and numbness or tingling. Partial complex seizures- Are characterized by a brief loss of consciousness, behavioral, emotional symptoms, loss of memory and automatisms. Temporal lobe and frontal lobe seizures are often in this category.

Diagnosis

EEG – Your child’s neurologist will probably want to do an Electroencephalogram (EEG) if they suspect seizure activity. Although EEGs are often helpful in diagnosing some types of seizures, it may not detect all. EEG’s are typically performed in the hospital’s sleep clinic and involve placing electrodes on the child’s scalp

Brain Scans and MRI – The neurologist may order a CAT scan or Magnetic Resonance Imaging (MRI) to be performed. Although these studies don’t show the electrical impulses, they may show lesions or other possible suspected causes of seizure activity.

Video EEG – This study is usually performed overnight at a hospital’s sleep clinic. It involves a video camera and constant EEG monitoring though out the study. With the video and EEG combined, the physician can collate any suspected abnormal physical motor occurrences with the EEG, better identifying the seizure activity with the physical manifestations.

Document It

If you suspect your child may be experiencing seizures, keep a journal and document episodes or behaviors you suspect to be seizure related. If possible have some one video tape the episode. This will give your child’s pediatrician or neurologist insight into what you are witnessing, since it’s unlikely your child will experience a seizure during your 15-30 minutes visit with the physician.

In the case of documentation, note duration of the episode, did you child becomecyanotic (turn blue) or have blue lips which would indicate they weren’t breathing properly, what was your child doing at the time, note any abnormal behaviors your child may have exhibited that made you suspect the behavior as seizure activity.

If your child already has a diagnosis of seizure and you don’t feel that their current medication is managing their seizures effectively, again, keep a journal of any suspected break through seizure activity you may see. There are many medications and combinations of medications that can be used for seizure control. If the seizures are adversely impacting your child’s quality of life, don’t give up. Persevere and continue to question your child’s physicians until you find the right medication or combination of medications that offers a better level of control. In my daughter’s case, I was told, considering the severity of her cerebral injury, she would never be seizure free, and that she most likely experienced silent seizures even during sleep. After birth she was prescribed an anticonvulsant which seemed to do little to control the seizures. It just seemed to “zone her out.” This was not acceptable to me and I persisted with the neurologists until they changed her medication and we found a combination that proved effective, at least during her waking hours, without the side effects that she seemed to experience with her initial medication. I was amazed at her new level of awareness after the change. To this day that same combination of medications has continued to provide an optimum level of control. Never give up!

Treatments and Medications

• Protect a person from harm during a seizure. One of the complicated risks of seizures is that further damage can occur in the brain with severe seizures. The individual can also be hurt while falling or during spastic episodes resulting from grand mal seizures.
• Anticonvulsant medications are normally prescribed in the management of a seizure disorder. Tegretol, Phenobarbital, Dilantin, Klonopin, Valium and Topamax are several examples of medications that may be prescribed.
• Vagus Nerve Stimulation Therapy – This therapy is relatively new and involves a surgically implanted battery, with leads threaded under the skin and attached to the vagus nerve. Vagus Nerve Stimulation involves a device which sends short bursts of electrical energy into the brain via the vagus nerve.
• Ketogenic Diet – This form of therapy involves a diet high in fats and low in carbohydrates and makes the body burn fat for energy instead of glucose. This form of therapy has been proven effective in some children in the prevention of seizures.

Side Effects

Every medication involves side effects. Some children may tolerate one medication but another child may experience intolerance or contradictions with the same medication. In my daughter’s case, I was in a position where I had to decide what side effects were acceptable and which weren’t. With the initial anticonvulsant, my daughter seemed unresponsive to her environment and “disconnected” from the world. That was not acceptable to me, but the new medication offered its array of side effects also. I remember researching the new medication in my boss’s Physician’s Desk Reference (PDR) and calling up the neurologist almost frantic!

Our neurologist was exceptional, and we communicated with ease. When I told him of my research in the PDR and my concerns (I think I heard a slight groan) he patiently explained to me that yes, the side effects and contradictions I was reading were cause for concern but the PDR had to list every incident of contradiction so the ratio seemed out of proportion. In most cases, the incidents were more a rarity then the norm. He assured me of the safety of the new medication and told me what would constitute severe side effects or contradictions that would warrant intervention. I thanked him for his time and for taking my call. My baby was a part of my world for the first time and was showing a new level of awareness. That went far in outweighing the unavoidable side effects and possible contradictions that came with the new medication. This isn’t meant to discourage a parent’s research, just the opposite. Educate yourself on all medications. That’s the only way you make an INFORMED DECISION.

There is much research being conducted and many clinical trials occurring in the field of neurology and seizure management. Many individuals are living seizure free as a result of the advances made in Neurologic medicine.

Questions to Ask Physician

• You may have a thousand questions in your head about your child’s possible seizures, medications, or management, but you won’t think of half of them during your appointment with your child’s physician or neurologist. Write them down as you think of them!
• Ask your physician what side effects to expect with any medication and what contradictions you need to be aware of and what to do in the case of a serious adverse side effect.
• Should your child take the medication with or without food? Make your child’s neurologist aware of any other medications your child may be on, whether it’s seizure-related medication or not.
• Make sure you’re aware of any blood work or lab work that needs to be done and the frequency. Many anticonvulsants require blood work to monitor the levels of the medication in the blood and to monitor possible kidney and liver function in relation to the medication.
• Some children experience seizures that may be triggered by different environmental or dietary factors. Ask your physician if there are any environmental factors or dietary issues that you need to be aware of.

National Cerebral Palsy Awareness Month

March is National Cerebral Palsy Awareness Month, a month designated to bring attention to this all-too-common disorder and the ongoing research efforts to find new treatments and possibly, a cure. At the Cerebral Palsy Family Network, we are proud to promote these efforts and be a part of such an important cause.
In 2011, the United States Senate designated March 25 as National Cerebral Palsy Awareness Day. The day was created to encourage all people in the United States to become more informed and aware of cerebral palsy. According to the resolution:

• Cerebral palsy is caused by damage to 1 or more specific areas of the brain, which usually occurs during fetal development, before, during, or shortly after birth, or during infancy
• The majority of children who have cerebral palsy are born with the disorder, although cerebral palsy may remain undetected for months or years
• 75 percent of people with cerebral palsy also have 1 or more developmental disabilities, including epilepsy, intellectual disability, autism, visual impairment, and blindness
• Cerebral palsy is increasingly prevalent, occurring in about 1 in 278 children
• Approximately 800,000 people in the United States are affected by cerebral palsy

To celebrate this special month, we’ve created a “Faces of Cerebral Palsy” video series showcasing children with cerebral palsy from across the United States. The photos were collected during our “What Works for CP Kids” iPad contest held late last year. Cerebral palsy is such an all-encompassing term, and our videos represent the many different types of CP and the wide range of abilities these precious children possess.
We hope these adorable kids bring a smile to your face and brighten your day! To see your child in an upcoming “Faces of Cerebral Palsy” video, submit your photo on our Facebook page.

Spending the Day with My CP Kindergartner

By Julie Ufema
View similar stories.
Recently, I witnessed something most people never will. I became the ‘fly on the wall’ that I had always dreaded, yet hoped I could be. My youngest son has cerebral palsy and his aide called in sick. No one was available to replace her. It was either keep him home or tag along, so tag along I did!

Surrounded by Five-year-olds

The day started out a blur. Dozens of five-year-olds swarmed the classroom, running this way and that, dumping their lunch boxes, backpacks and layers upon layers of clothing in their respective cubbies. They each turned in their homework folders, some more agreeably than others, and then found their seats.
When the bell sounded, I regressed into that over-stimulated kindergartener of many decades ago, riddled with anxiety in anticipation of another school day. Don’t get me wrong, I loved school (when I was younger), but was always consumed by the need to be the best. Now, sitting next to my own son, watching the others rise for the pledge of allegiance while he remained sitting in his wheelchair, I became acutely aware of what ‘being the best’ really means.
We went through the lessons of the day: reading, writing, AND arithmetic! My mind reeled while witnessing the expectations that a five-year-old is faced with in today’s school system. Gone was the rudimentary blackboard, which has been eclipsed by a sophisticated ‘smart board.’ No more half-days filled with playtime, snacks and the occasional nap. No ma’am. We got straight to business, and in a good teacher’s classroom, the business of teaching is no easy feat.
The usual characters reared their familiar heads. One after the other, out they came – the one who can’t sit still, can’t stop chattering, can’t keep their hands to themselves, can’t follow directions, can’t pay attention… the list goes on and on.  And then there are the know-it-alls, the quiet ones, the shy ones and the ones that simply seem to have it all figured out.
I had to wonder if Dane would have been a different student if not born with cerebral palsy.  How would his education be affected by the physical limitations he faced on a daily basis?  When the rest of the kids sat in circle, Dane towered above in his ‘chair.’ When the others gathered for ‘group time,’ they fell to the ground pushing around cars and building blocks. I held Dane in my lap and tried to play along. He clearly seemed more satisfied at an arm’s length away than I, but no sense dwelling on such serious things when it was time for lunch!

The Lunch Rush

We wheeled down to the cafeteria, where I quickly remembered the agony of waiting in the dreaded lunch line. Valuable time slipped away from a little boy that needs three-times as long to eat as everyone else. I was getting the bigger picture now.
There was no time to lose. Unfortunately, my mom instincts had kicked into overdrive. A sea of hands filled the air. I was caught by the desperate stares of a room full of kids, each assuming that the new grown-up must be there to help them all. A sweet little boy offered to watch Dane while I assisted the others. My heart melted.
I opened containers, tied shoelaces, unscrewed water bottles, tore open ketchup packets, rescued flying silverware and poked at juice boxes. It seemed that all 200+ kids were in need of some sort of assistance, disability or not.
Over the next 20 minutes my ability to keep the tears in check was tested. I watched as a parade of students fell in line to empty their trash and rush off to recess. For every two kids that passed us, one said hello to Dane. And not just a hello, but an enthusiastic “Hi Dane!” or “Hi, Jett’s brother!”
They ALL stared, but that’s OK. They are five and Dane is gorgeous. I’ve always told Dane not to worry when people stare, but to worry when people stop staring.
We were the last to finish our lunch and still needed to visit the nurse’s office for afternoon meds. By the time we made our way to the side of the school where the playground is wheelchair accessible, the children were already lining up to come in. My heart sank as I watched the disappointment wash over Dane’s exuberant eyes. I quickly ran him once around the track while he smiled at the disappearing children who were still calling out his name.

Writing and Sharing

Back inside, his classmates were already knee deep in “Kid Writing,” apparently Dane’s favorite activity. He told me to hurry, afraid I would cause him to miss something else. I hurried! We peeled off his jacket and threw it under his chair. No time for formality when there was creating to do! I knew it wouldn’t take long for me to start breaking the rules.
Dane grabbed at the markers I had dug out of his bag. A watchful little girl was quick to tell me that those were not allowed and that I needed to switch to crayons immediately! Yuck. More rules. So, OK, I switched to crayons and Dane scribbled madly, telling me what I was looking at every step of the way.
When everyone was finished, the teacher announced that they could choose someone to tell his or her story to. The rush that followed nearly knocked me off my chair. A dozen kids closed in on us proudly holding up some darn impressive creations. Dane just grinned from ear to ear.

Gaining a New Appreciation

It was a long day that flew by, if that’s possible. I did look up at the clock a few times, as I did a hundred times a day when I was in high school. But I smiled more than I had expected. I sang along when the teacher pulled up classic clips from Sesame Street. I lit up when I saw a child understand something for the first time and genuinely beam when being praised by the teacher.
I was a fly on the wall and lucky to be one.  Every parent should be required to do the same.  I came home with a deep appreciation for every staff member in that school and a better understanding of what I can do to help facilitate my child’s education. I probably learned more in that one day of kindergarten than in all five of my attempts to finish college (and it was a whole heck of a lot cheaper)!

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

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Cerebral Palsy News: 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 theUniversity 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.