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

View similar stories.

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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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.

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.

World CP Day Celebration!

In celebration of World CP Day, Cerebral Palsy Family Network would love to know how CP has affected your world. This can be anything from the hardships to the triumphs. The Cerebral Palsy Family Network was created to help families find the resources they need locally and globally to overcome the challenges CP presents. Please take some time and tell us about your story in the comments section of this article. We will be highlighting the stories in upcoming blogs and newsletters. You never know how your story may impact people across the world, so don't hesitate to share.

Starting in 2012 and going forward, the first Tuesday in September will take on a whole new meaning across the globe. Tuesday September 4, 2012, will be the first annual World Cerebral Palsy Day. This will be a day for 17,000,000 global citizens to come together to raise awareness on a local, national and international levels in a collaborative effort to make a difference in the lives of those living with cerebral palsy and their families.

Cerebral palsy (CP) is a widely misunderstood condition that affects twice as many people as multiple sclerosis. Yet, the public has limited awareness and understanding of cerebral palsy. CP is actually the largest cause of physical disability in children and the incidence occurs at a rate of somewhere between one in 400 to 500 births. One of the greatest barriers to gaining a higher profile for CP is that cerebral palsy is often used as an umbrella term for encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement, unlike many other disabilities which have more narrowly defined conditions.

 “World CP Day is an exciting world first, not only to engage the CP community to create innovative ideas that could change their world but also to engage inventors, developers, innovation companies, universities or even people with disabilities who are budding inventors to create products and solutions to the many ideas submitted,” explains Marcus Blease, General Manager of Fundraising & Marketing from Cerebral Palsy Alliance in Australia.

This worldwide awareness initiative aims to shed some light on the perceptions in various countries that people with disabilities are ‘taken care of’ by the government and do not need financial support from the public. This worldwide initiative by partnered CP agencies, which includes organizations in Canada, USA, Australia, England, Scotland, India and many more, are joining forces to raise the level of awareness and understanding through this collaborative celebration of World CP Day.

World Cerebral Palsy Day, on 4 September 2012, is a world first!  It will change the lives of people with cerebral palsy (CP).  The theme for this unique day is 'Change my world in 1 minute'. 

There are 17 million people around the world with cerebral palsy.  A further 350 million people are closely connected to a child or adult with CP.

Visit the official World CP Day website to learn more about World CP Day and participate in the "Change my world in 1 minute" challenge. The website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. The website also gives anybody the opportunity to make these ideas a reality by posting ideas about how they want to improve the quality of life of people with CP. These ideas could affect any aspect of a person’s life such as their mobility, independence, accessibility, communication or social connection.

Learn more about World CP Day!Sign up for our weekly newsletter! 

Isolation room for children with disabilities - STOP THIS NOW

Lately we have been discussing the education systems methods of isolating children with disabilities.  Some teachers use them to punish children. Many times, placing children in the rooms is a convenience for frustrated employees. And there is little evidence that seclusion helps children but plenty of evidence that it hurts them.  Have any of you or a loved one been put in one of this isolation rooms before? 

http://bit.ly/seclusionrooms

For medical and legal information for your child with disabilities please visit:

http://www.cpfamilynetwork.org/

New Law Provides Better Access to Medical Records and Buildings

On the 22nd anniversary of the Americans with Disabilities Act, two more milestones for disabled Americans have been reached:

• Guaranteed easy physical access to medical buildings, especially for adults and children in wheelchairs.
• Audio access for deaf and hard of hearing to medical information in a manner that is understandable to them.

These improvements are the result of settlements in complaints filed in Michigan and New Hampshire by the U.S. Attorney’s Offices. Known as the 200th Project Civic Access agreement, they led to the U.S. Justice Department Barrier-Free Health Care Initiative. The changes will impact more than four and a half million individuals with disabilities.
This nationwide initiative reinforces the message that disability discrimination in health care is illegal and unacceptable. Federal prosecutors across the nation will spearhead this new effort designed to guarantee access for disabled people to all medical buildings and to ensure the disabled are not discriminated against in receiving potentially lifesaving medical information.
Over the next few months, specific initiatives will begin. Be sure to follow CP Family Network on Facebook and Twitter for the latest news on cerebral palsy and disability rights.

National Cerebral Palsy Awareness Week in Australia

June 31, 2012

From http://www.cerebralpalsyaustralia.com/

This week in Australia they are celebrating National Cerebral Palsy Awareness Week (CP Week) to recognise the achievements of people with cerebral palsy and to create greater awareness, understanding and acceptance.

CP Week 2012 will be held from Monday July 30th to Sunday August 5th. Through CP Week, Member Organisations work to make our community more inclusive, more accessible and more welcoming for people living with Cerebral Palsy. Support is seen throughout the week through activities, programs and initiatives.

The important message for our community is to focus on seeing people with cerebral palsy firstly just as people, and to work together to achieve full social inclusion.

“National Cerebral Palsy Awareness Week highlights that with the right support people with Cerebral Palsy can and do reach their potential, despite the economic, physical and attitudinal barriers often faced,” said Glenn Rappensberg, President, Cerebral Palsy Australia.

Here is an exclusive interview from Col Clifford as he talks with Angela Tillmans, the CEO of the Cerebral Palsy League, and Laura Scurr who has Cerebral Palsy and has graduated with a double degree from the USQ Toowoomba.

http://blogs.abc.net.au/queensland/2012/07/download-cerebral-palsy-week.html

For further information please contact Cerebral Palsy Australia.