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Cerebral Palsy

Cerebral Palsy Poster Child
Jade Travis

Cerebral Palsy Poster Child
Todd Nardone

Introduction

Cerebral palsy (CP) is a neurological disorder affecting body movement and muscle coordination. CP is typically caused by an injury to the brain before, during, or shortly after birth. (However, it is also used as an umbrella term to describe disorders which impair the control of movement resulting from faulty development of areas of the brain.) When the brain injury occurs while the baby is still in the womb (80% of reported cases), it is difficult to explain what caused the problem. It may be caused by abnormal fetal brain development, an infection, an accident in which the mother was injured, a medical condition that the mother had during pregnancy, such as high blood pressure or diabetes, or unknown biochemical or genetic factors. If the injury occurs during birth (10% of reported cases), it is usually due to a deprivation of oxygen or an injury upon having a difficult delivery. Last, if the injury occurs after birth (10% of reported cases), it may be due to a baby being born prematurely, where his or her body is not ready to survive outside the mother’s womb, an infection, an accident where the baby is injured (i.e., motor vehicle), or bleeding in the brain. Approximately 1 in every 1,000 infants have some form of CP.

CP was first described in the 1860's by an English physician named William Little. He wrote about children who were stiff, had spastic muscles (more so in the legs than arms), and had difficulty grasping objects, crawling, and walking. The condition was called Little’s disease, however, he was describing what is now known as spastic diplegia cerebral palsy.

 

Features and Characteristics

Children with CP have the inability to control their muscle coordination. Depending on where the damage to their brain occurred, they may have muscle tone that is too tight, too loose, or a combination of both. In addition, some children may have abnormal sensation and perception; impaired sight, hearing or speech, seizures, mental retardation, feeding difficulties, learning disabilities, bladder and bowel control, and difficulty breathing due to postural difficulties. There are four different types of cerebral palsy:

Spastic Cerebral Palsy

If the muscle tone is too high or too tight, the individual has spastic CP. Children with spastic CP often have stiff and jerky movements due to their tone. They often have a hard time moving from one position to another, and often times have difficulty letting go of an object with their hand. Spastic CP is the most common type; approximately 50% of individuals with CP have spastic CP.

Ataxic Cerebral Palsy

When the individual has low muscle tone and poor coordination of movement, they are described as having ataxic CP. Children who are ataxic, look shaky (tremor-like) when trying to perform a task. They often have poor balance and may be very unsteady when they walk.

Athetoid Cerebral Palsy

Athetoid CP is used to describe the individual who has both low and high tone. Children with this type of CP have difficulty holding themselves upright or steady for sitting or walking and have involuntary movements in their arms, upper bodies, and face. Because of these movements, it takes a lot of hard work and concentration to reach for an object. In addition, mixed tone causes them to have difficulty holding onto things.

Mixed Cerebral Palsy

This type of CP is used to describe the individual who experiences both low and high tone.

In addition to having the different types of CP, there are also classifications for the areas of the body that the CP affects:

Quadriplegia

This refers to the individual who is affected in all four limbs. Children with quadriplegia have difficulty moving all of their body parts, and often times require a wheelchair for mobility. Due to the problems controlling the muscles in their face and upper body, they may have trouble speaking and eating.

Hemiplegia

This term is used to describe individuals who have CP that affects only one side of their body - either the right arm and leg or the left arm and leg - while the other side functions normally. Children with hemiplegia are able to walk and run, however, may have a slight limp or awkwardness in their gait.

Diplegia

Individuals who have diplegia are only affected in their legs. Walking or running may be difficult for them, however, since their upper body is not affected, they are able to hold themselves upright and have good use of their arms and hands.

 

Diagnosis

Physicians diagnose CP by looking at the child’s motor skills, medical history, development, and characteristics described above. The physician will also test reflexes and look for early development of hand preference (babies younger than 12 months generally do not show hand preference). In addition, the physician must also rule out other disorders that can cause movement problems. The doctor must rule out that the disorder is not getting worse, as CP is not progressive. If the child is losing skills, he or she may have a genetic disorder, metabolic disorder, or muscle disease. Many times, a CT-scan, MRI, and a sonogram may be ordered as well to identify brain disorders or areas that are underdeveloped.

 

Treatment

While there is no cure for cerebral palsy, there are several effective treatments available to improve muscle coordination and function. The child with CP should be involved in a program that addresses movement, speech, learning, and social and emotional development. Physical therapists may help children with such tasks as walking, operating their wheelchair, and standing. They can also work on more pleasurable skills such as throwing a ball or learning to ride a bike. Speech therapists can work with the child to teach them how to speak, use sign language, or use a communication device. Occupational therapists can assist children with skills such as brushing their teeth, dressing themselves, and feeding themselves. Recreational therapists help the children have fun! They can work on dance, swimming, or horseback riding. In addition to these therapists, the child should be seeing a pediatric neurologist to coordinate the child’s care and an orthopedist to predict, diagnose, and treat muscle problems associated with CP.

Those individuals who are experiencing spasticity, may find drug therapy beneficial. Baclofen is a muscle relaxant and antispasmodic that works by inhibiting the nervous system. It is administered by a pump implanted under the skin of the abdomen (it can be taken by mouth, however, high doses are needed when taken orally). The drug does have some side effects, however. It can cause drowsiness, confusion, and difficulties with balance, and in high doses, it can cause breathing difficulties and problems with heart and kidney functions. Baclofen is not recommended for children under 12 years of age. Other drugs sometimes used include Dantrolene, which interferes with the process of muscle contraction, and Diazepam, which acts as a general relaxant of the brain.

Botox is also sometimes used for the treatment of spasticity. It relieves muscle spasms by blocking the transmission of a nerve impulse to a muscle, causing the muscle to be weakened or paralyzed. It is administered by a needle into an affected muscle, and results are usually seen within 3 days, lasting up to six months. This method is usually very closely followed by an organized physical therapy program.

Electrical stimulation has been used to treat muscle spasticity and tendon contracture, however, the effects of the stimulation appear to be temporary. It is usually used intermittently with a broader treatment program.

Surgery is often needed when contractures are severe. Surgeons can lengthen tendons and muscles after determining the exact muscles at fault. Selective dorsal rhizotomy is another type of surgical procedure that is used with individuals who have spasticity, in which sensory nerve fibers just dorsal to the spinal cord are identified, and then are selectively cut to diminish tone in spastic muscles of the lower limbs.

 

What to Expect

The symptoms of CP differ from person to person, however, it doesn’t always cause profound limitations. While some individuals may require a wheelchair for mobility and require life-long care, others may be only slightly awkward and need no special care at all. As the child matures, many times they will need additional services to help them function in society, such as educational and vocational training, independent living services, counseling, transportation, recreation/leisure programs, and employment opportunities - all essential to the developing adult. People with cerebral palsy can go to school, have jobs, get married, raise families, and live in homes of their own. Most of all, people with cerebral palsy need the opportunity for independence and full inclusion in our society.

 

Personal Stories

My son, Joshua Kyle Craig, was born at 30 weeks gestation due to a premature rupture of membranes. After 18 hours of labor, 4 lbs. 5 oz. Joshua entered the world on March 19, 1994. He stayed in the NICU for two months and had problems breathing and eating, and had an infection. When we took Josh home, we told our families how lucky we were - some babies had brain bleeds and feeding tubes. We escaped all problems - so we thought - and just had to get Josh "bigger" and all would be well.

My husband and I took Josh to his one year check-up and asked the doctor why Josh wasn't meeting his milestones and why he was so stiff. All along, we had been told that he would catch up eventually... but we knew something was not right. I told the doctor that I thought Josh's symptoms sounded like CP - I had been researching online. He said "Well, he does have CP. We'll get him some occupational therapy and he'll be fine..."

Two months later after an MRI, Josh was diagnosed with PVL, a type of brain injury that is caused by lack of oxygen or low blood pressure. It causes cysts in the white matter of the brain and those cysts cause him to have CP (which is an umbrella term for any brain injury causing physical problems). Josh's CP is called spastic quadraparesis cerebral palsy. This means that he has difficulty using all 4 limbs because they are too stiff. He needs help eating and getting dressed and going to the bathroom - all basic needs are difficult for him.

Today, Josh is a happy, very bright and beautiful almost-5-year old, who is just like every other boy - he loves Nintendo, computers and cartoons! We are very blessed in many ways - Josh is very verbal and very social. He's learning to drive a power wheelchair and plans to go to a mainstreamed kindergarten class in the fall.

For years, our goal for Josh was to find a way to get him to walk. But over the years, that goal has changed somewhat. We'd still LOVE to have him walking, but we now hope to help him function with what he CAN do. We've attended two sessions of conductive education and have really appreciated all the new ideas we’ve learned. Josh learned to sit better (including on the potty) in CE classes and that was priceless. This summer, Josh will have a trial for the baclofen pump. We hope it provides him with enough spasticity reduction to help him walk better and sit longer. - Shelli Craig

Todd was born 9 weeks prematurely and after five weeks in the NICU, he was released home to our care; finally! We were told nothing of the possibility of "signs to watch for" or that he may be developmentally delayed, etc.

At 6 months of age, he was evaluated by the follow-up clinic and determined to be developmentally delayed. During some intense research on the title, I came up with a surprising diagnosis. The chapter in my book entitled "Cerebral Palsy" fit Todd perfectly, and for a moment, my life stopped and took an abrupt turn. When I confronted his pediatrician with the facts, she agreed that this was a concern of hers as well. (It must be noted here that she has a son 2 years older who has cerebral palsy.)

Todd has spastic diplegia. When the neurologist asked for the hospital records of Todd's birth and extended stay, I ordered them, since I had never thought to ask for them after his discharge. I was amazed to find that after his birth, his apgars were 7 and 9 (that's fantastic for a 3 pound, 13 ½ oz. baby!) and that on his way to the NICU, he had stopped breathing and needed to be resuscitated! NO ONE HAD EVER MENTIONED THIS! Although no one can be sure, the neurologist believes that it was at that point that the brain damage occurred.

Todd is now 4 1/2 years old and so many bridges have been crossed in his short life; I have become a stronger person because of every bridge we've journeyed over. Todd uses a manual wheelchair and recently received a Standing Dani that we've allocated for use in his preschool.

There's not a day that I don't see that Todd is not just my child, but a beautiful gift from God who brightens everyone's life he touches. We joked with him recently that he should be the Pope when he grows up! He has such a genuine affection for life and allows us all to see things in a new light. He's my angel, who continually forces me to see things differently and gives me the courage to change the things that are wrong. - Debbie Nardone

I am the mother of a 5 year old son with spastic diplegia. His CP is the result of a placenta abruption at 33 weeks gestation. He was diagnosed at one year of age when he still could not sit up. He has come a long way since then! In January ‘98, he had a Selective Dorsal Rhizotomy (RDS) to relieve the tone in his legs. He then underwent extensive physio therapy for a year. He now walks using forearm crutches and uses a wheelchair for long distances only. He will be integrated into our community school in September ‘99.

This winter, my son has started playing sledge hockey. A sledge is like a sled with skate blades under it. The kids have sticks with picks on one end (to push the sledge) and a hockey stick on the other. He is really enjoying this sport. It allow him to compete with other kids that have disAbilities and be successful. It is also great for the older kids to help out the younger ones. Great confidence booster!! - Fran Chaput

My daughter, Amanda, has spastic diplegia CP. Her problem is from the waist down. She walks somewhat with a walker and uses a wheelchair at school. She has no problem with speech, but is a little slow at writing (although I think some of the problem is the school, not her). She loves books, playing T-ball, swimming, going to dances, and playing video games. She is seven years old, is in first grade, and she is a Brownie. She keeps mom going all the time! - Linda Ewing

My son, Josh, was diagnosed with CP when he was 15 months old. He had a stroke before he was born. We do not know what caused the stroke. He now has left hemiparesis, apraxia of speech, and sensory integration disorder. Left hemiparesis means he is weak on the left side. He goes to physical therapy, occupational therapy and speech therapy (one time per week for each therapy). He wears a thumb abductor brace on his left thumb to keep him from fisting his left hand. He wears a left hinged AFO on his left leg to help him keep his left leg straight. He wears an arch insert in his right shoe to keep his right foot from flattening. He used to wear an eye patch over his right eye to strengthen his left eye, but now we are going to have surgery on his eye muscles to keep his eyes aligned together.

He is now 2 ½ years old and is just starting to walk on his own. He still cannot squat or get up to standing without holding onto something. He cannot walk up and down stairs yet and he cannot stand for long periods of time. He cannot speak or use body language to communicate. Currently, his only way to communicate is to cry or whine and then we have to guess what he wants. He does not use utensils to eat; he only uses his fingers. He just recently learned to drink from a cup while sitting, and drink from a straw. - Shannon Rawlings

Our son, Christopher, was born in June 1996, at the local hospital here in Toowoomba, Australia. He was full term and I'd had a reasonable pregnancy, so we were not expecting anything unusual to occur on June 6th. We went to the hospital with the usual nervousness, and I was in labor for 13 hours. Then, things began to go drastically wrong.

Christopher's heart rate suddenly dropped away to almost nothing, and this happened three times in fast succession. The midwife called in a doctor and I was put on oxygen. The doctor did a blood test on the baby and realized that he was not getting enough oxygen for some reason (we still don't know why this happened). He immediately called for a caesarean section and I was wheeled rapidly into surgery.

Suffice it to say that our son was born 11 minutes later with an APGAR score of ... zero! The medical team worked hard to revive him, and he took his first breath 9 minutes later. However, the time without oxygen caused serious brain damage. We weren't warned of this possibility at the time. Although Christopher spent two weeks in a special care nursery, we went home thinking things were going to be fine.

Six months later, I had the opportunity to compare our son with another baby boy who was born the same week. The moment I held that other little boy in my arms, I knew there was something badly wrong with our Christopher. After a month of testing and endless appointments, I finally asked the pediatrician if our son had cerebral palsy. The answer was yes.

I still remember the feelings I experienced throughout the next few weeks and months. Those first few days I felt as though I was being hit hard with sudden pain and grief every couple of hours. I'd be going about my work, when suddenly I'd realize "our baby has brain damage." Those moments are etched into my memory forever. But as time passed, the times of acceptance grew more frequent. Now, almost 2 years after hearing his diagnosis, I can honestly say I have come to terms with his disability. That is not to say that we don't grieve - I think the pain will always be with me to some degree, but I love our little guy so much, that nothing can take that away.

Christopher has athetoid cerebral palsy, which seems to affect his physical skills only. He is a very bright little boy, and understands everything we say to him. We are doing a lot of therapy with him each day, through a program designed especially for him by the National Association for Child Development (NACD). Since we've begun this program, I have been delighted to see his progress. Christopher is now saying 45 or more words (although some are still a little hard to understand) and he has just started to crawl on his own!! We have been very excited to watch him develop at his own pace.

Christopher is a gift from God. We are so thankful that he made it through his difficult birth experience to share his precious life with us. He has been joined by a delightful little sister, Catherine, who is 7 months old now. It has been fascinating to watch the two of them interact - and to see how easily Catherine learns the things Christopher is working so hard to achieve. We feel so very rich to have both of our children, and love each of them with all our hearts. - Tamara Hill

My son, Danny, was born full term, weighing 8 lbs. 4 oz., by emergency C-section due to a prolapsed cord. This caused him a lack of oxygen leading to perinatal asphyxia. He was resuscitated at birth and had seizures. He was flown to Children's National Medical Center where he was on a ventilator for 9 days. His MRI showed hypoxic ischemic encephalopathy. The damage to his brain consists of two small spots on the basal ganglia; these spots caused Danny to be given the cerebral palsy diagnosis - more specific, athetosis with hypotonia (all extremities involved).

Danny also had dysphagia, causing him to need a feeding tube. He is 20 months old now and cognitively, he seems on target, but it is hard to assess, as he is developmentally delayed, especially with his gross and fine motor skills, and is non-verbal. He has, however, started using augmentative communication devices and switches at 16 months, and is doing well. Danny receives physical therapy, occupational therapy, and speech therapy at home. He also is getting electric stimulation for his muscles. We use a Kid Kart pediatric wheelchair, which he received at 12 months of age. Danny recently went to Cleveland for a new treatment involving electric stimulation therapy for swallowing. We're happy to report he is no longer NPO and has begun eating by mouth for the first time since the age of 4 months; but, we are still battling the reflux issue.

We were devastated at the prognosis we were given for Danny early on in the NICU. But today, I could not be prouder of my little boy. He has gone through so much already and is such a fighter. He works so hard in his therapies and is usually quite cooperative with his therapists. He is a joy to have in our family and has taught us all so much. - Kathy O’Donnell

Chelsea was born in Romania, and from what the doctors told us, she had a difficult delivery. The doctor also told us (at seven weeks of age when we found her) that she was developing normally now, but they did not know what her development would be in a year or two. At about ten months of age, she had an MRI which showed damage to the brain, at which time she was diagnosed with cerebral palsy. She is a hypotonic quadriplegic, with her upper body more affected; therefore, she cannot sit alone without support. She requires a wheelchair, however, she can walk for short periods of time as long as her trunk is supported. She can only speak words such as: "hi, ma, pa, yea, no, bye." and she uses a Dynavox to communicate. She is unable to use her hands effectively, so she uses a head switch to activate her Dynavox, as well as other things. She has just recently gotten a power chair, which is activated by switches in the headrest.

Chelsea is a little social butterfly. People are just drawn to her by her sweet personality and beautiful smile. She has a way of making the gloomiest day bearable. Her big brown eyes are so expressive, and that is how her Dad and I have always communicated with her. We did not go to Romania to adopt a special needs child and when we were first told that she had cerebral palsy (which we didn't even know what it was at the time; we just knew it was not good) we were crushed. However, we know now that God has given us a special gift and our world would not be complete without her. She has taught us so much about life and loving others. We feel blessed to be Chelsea's parents. - Jennifer Gorman

My son, Mark, was diagnosed at age one with right spastic hemiplegia. He was probably born with this, but wasn't referred to a neurologist until his very first birthday. After Mark received the diagnosis of cerebral palsy, we started occupational therapy, physical therapy, and speech therapy. I strongly feel if we hadn't started those services then, he would not be doing as well as he is now.

Mark went on to develop a severe seizure disorder that at one time had gotten so out of control, and he was losing in quality of life, that his neurologist was thinking about referring him to a doctor that specialized in brain surgery for these types of severe seizures. Thankfully, through a turn of events, Mark's seizures are now fairly well controlled. Unfortunately, however, because of the lasting effects, he is now mentally challenged. He is also severely hearing impaired in his right ear and his speech is sometimes difficult to understand.

Mark is now 16 years old. This summer, he will be competing in the World Special Olympics in Raleigh, North Carolina. He will be representing Illinois on Team USA and will be one of 7,000 athletes from 150 countries. The event he will be competing in is the Equestrian event. Yes - he rides horses and does a darn good job at it! He also plays on the Challenger League Baseball Team, plays basketball, and is a big fan of NASCAR. He fishes, boats, bowls, competes in the Special Olympics Track and Field and does numerous other things. He has undergone three surgeries on his right leg to help him walk, and right now, has developed mild scoliosis which is being monitored. He does not let anything slow him down.

Mark is now working towards getting a job in the next year or so; only the sky is the limit on what will take place. No matter what Mark achieves or even doesn't achieve, I will always be proud of him, and the fact that in such a short period of time, he has overcome so much.

Mark has certain textures of food that are difficult for him to eat, he has difficulty with his speech, his right hand will never be as good as his left, and he will always need some type of assistance to help him in day to day living. But, that is no reason to not go out and experience life. Someday, when he is older, hopefully he will have his own apartment or home and have a roommate or two and also a job. If he doesn't, it won't mean that I love him any less than I do now. All of this in 15 years since his diagnosis and a wonderful doctor who said at that time, "I don't see why this will slow him down" and "He should be able to live a life similar to yours and mine." He was so correct. - Robin Decker

I started having contractions every 6-9 minutes. The doctors said I was in labor and I would give birth any day. Three weeks later, and still pregnant, I woke up on my stomach and noticed that Jade was not moving at all. I went into the hospital at 3:00 p.m. to be hooked up to the machines. The doctor came in and broke my water, which, was stained with a minimal amount of meconium. I was told I was going to have an emergency C-section because the baby’s cord was around her head and causing her heart to fail.

When Jade was finally born at 8:51, I didn't hear a cry. I was able to look over and see the top of her curly brown head, and I could see that she was very pale and not breathing. Twenty minutes later, I was done being sewn up and I still had not actually seen my beautiful baby girl. I was in recovery before someone came and told me she would need to be rushed to Savannah, over an hour away.

Jade had a hole in her placenta that caused almost all of her red blood cells to leak out into me. Since we had the same blood type, I didn't get sick. Jade had 10% RBC and 90% fluid. She was going to need blood and to be in the ICU. I had no choice and signed the papers right away. Jade was rushed off to Savannah with her daddy in tow.

Jade was born on a Sunday; I didn't get a chance to really see her until Wednesday morning. Even though she had tubes and wires sticking out of her, she was mine and she was beautiful. We were not given a good prognosis. We were told that Jade wouldn't live through Christmas Day and that she didn't have a good chance of a life at all if she did live. She had many different tests those first few days. Her CT-scan was very discouraging and her EEG's weren't any better. Jade had no brain activity and her brain was very swollen and full of fluid.

Christmas Eve came and went and she still had not taken a turn for the better. She wasn't breathing a lot on her own and the machines seemed to be doing all the work. Then, on December 26th, my husband and I went to the hospital, knowing that this was the day that we were going to discuss and possibly pull the plug on all life support for Jade. I remember the day very well; but what was going to be the worst day of my whole life, turned into the happiest! I walked around the corner to where her bed was and noticed that her heart monitor was showing nice deep breaths and a good strong heart rate. SHE was doing it all on her own! In the night, Jade had pulled her respirator out of her throat and was breathing on her own! Another scan showed that her brain functioning was increasing and she was well on her way. We were told that she would live for sure, but have no quality. She would never eat out of a bottle, or smile, or be able to tell who her parents were. We didn't care... we were just happy to have come this far.

As the days went on, Jade was becoming more and more alert. She was sucking on things and I insisted that she have a pacifier. In two days, Jade was eating 2 ounces of formula out of a bottle. She had reflux so bad that it all came back up, but she was taking it out of the bottle and was sucking, swallowing, and breathing at the same time.

Jade continued to progress and was moved up to non-critical ICU on January 3rd. After one week of no oxygen and no heart monitoring, she was released from the hospital to come home and live with us. Jade had a very rough start, but has been proving the doctors and everyone wrong ever since she was born.

Jade was diagnosed as a spastic quadriplegic. She seems to have no use of her arms at all. She will push you out of the way if you are bothering her, but she will not reach and grab for toys or hold her own bottle. Jade has limited use of her legs and has had abductor release surgery to help with some of the scissoring that she was doing. Jade will take steps if you support her to where she has hardly any weight on her legs. Even though Jade has limited use of her legs, she LOVES to stand up and recently got DAFO's for her ankles to help give her some support. Jade also has sight and hearing problems.

Jade is a very special girl. Even though she can't speak, walk, talk, or eat off of a spoon very well, she has many talents. She is also very manipulative - she will cry big, huge, alligator tears until you pick her up, and then she immediately hushes and smiles at you. I can just hear her thinking "ha ha Mommy... I got you again." We were told we would never get more than a smile out of her and I am rewarded daily with smiles! I love to see her beautiful smile. Jade is a great joy in my life and I know that she is loved by everyone that comes in contact with her. She is my miracle baby. - Tara Travis

 

Resources

If you are interested in meeting other parents and individuals who are involved in raising a child with cerebral palsy, the following listserv is available:

CPParent - Send an e-mail to listserv@maelstrom.stjohns.edu, leave the subject field blank, and in the body of the e-mail type the words "subscribe CPPARENT (your name)" (without the quotes). You will then receive a confirmation.

For more information on cerebral palsy itself, visit these helpful sites:

 

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