St. Louis Doctor with Cerebral Palsy Offers Hope

ST. LOUIS - Dr. Jan Brunstrom-Hernandez gently but sternly admonishes a teenage cerebral palsy patient who clearly hasn’t been doing his exercises, stressing the importance of keeping muscles loose and limber.

“We know it’s not fair, but that’s the way it is,” Brunstrom-Hernandez tells 15-year-old patient Sam Ward. “Do you hear me? I know what I’m talking about.”

Brunstrom-Hernandez, who founded the Cerebral Palsy Center at St. Louis Children’s Hospital 15 years ago, has cerebral palsy, giving her a special empathy for the people she treats.

Cerebral palsy is a broad diagnostic term referring to disorders that affect movement and posture. It is caused by injury or abnormal development of the brain, usually before birth. Many patients suffer from other afflictions, too, such as speech or hearing difficulties. Symptoms vary greatly.

Brunstrom-Hernandez, 50, was surrounded by doctors from a young age as she coped with the disorder. She figures that’s a big reason she knew as a small girl she wanted to be a doctor. Still, she initially balked at specializing in treating others with cerebral palsy.

“I didn’t want to be surrounded by more of me,” she said. “I didn’t feel good about myself because of my disability.”

A chat in 1997 with Dr. Mike Noetzel at St. Louis Children’s Hospital changed all that. At the time, Brunstrom-Hernandez was doing research on cerebral palsy and was surprised to learn treatment hadn’t progressed much beyond the treatment she received in the 1960s. He suggested she launch a cerebral palsy clinic.

“All I said was, ‘You’ve got some good ideas. I think people would listen to you. Let’s at least try to start something,’” he recalled.

The clinic opened in May 1998.

Many clinics in the U.S. treat cerebral palsy among many other neurological disorders, but the St. Louis center is unique in its singular focus, said Kaelan Richards of United Cerebral Palsy.

Brunstrom-Hernandez and her team of doctors and therapists see patients of all ages — babies to adults — from across the world. The center has treated about 2,000 people since opening 15 years ago.

Sam, at the clinic recently with his parents, is in many ways a typical teen. He wore a T-shirt, shorts and sported a sly grin as Brunstrom-Hernandez examined him — even through her motherly admonitions.

“She helps me walk better,” he said. “Just be better.”

Anna Marie Champion of Atlanta has been bringing her daughter, Morgan, on the 11-hour trip to the St. Louis clinic for 10 years, since Morgan was 3. Morgan uses a walker but is scholarly and motivated, a seventh-grader who already has earned a college scholarship.

“We went to St. Louis, and it was a whole different approach,” Champion said. “It has turned her life around completely.”

Brunstrom-Hernandez stresses the need for exercise and communication. From childhood, movement was difficult for her.

“If the wind was blowing hard enough, I’d fall down,” Brunstrom-Hernandez recalled.

Her mother made her keep moving, even requiring her to stand in the kitchen to do dishes when it was the last thing the little girl wanted to do.

“She insisted that I not be dependent,” Brunstrom-Hernandez said. “She insisted that I pull my weight. It’s a good thing. It made me tough, and it made me strong.”

Strong, yes, but Brunstrom-Hernandez acknowledged she sometimes felt embarrassed by cerebral palsy. She recalled how she would recoil if she caught a glimpse of mirrored glass showing her struggling to walk.

It wasn’t until she started the clinic that she embraced who she was and what she could do to help others.

“I have gotten as much or more out of taking care of these patients as they have ever gotten from me,” she said. “It changed my life. They saved my life. They taught me how to believe in myself. They taught me how to look at myself differently.”

Moving around the clinic, only Brunstrom-Hernandez’s gait shows any effects of her cerebral palsy, though rheumatoid arthritis causes her pain. She acknowledges it can be physically exhausting.

“I have to work all the time to stay on my feet,” she said.

It’s a dedication that doesn’t go unnoticed by her colleagues.

“I think the empathy does come through,” Noetzel said. “Her line is kind of a tough one: If you really want to do best, this is what you need to do. I think there’s a much greater acceptance coming from her.”

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How to Take Time for Yourself

By Denise D. Aggen

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Respite care. How many parents really take advantage of this short-term break from caring for a family member with cerebral palsy? As a single mother, I was offered this many times, but never took advantage of it. My main concern was who would stay with my daughter with CP and could I trust them. My family is not able to help me with my daughter, so I have to depend on outside care for help.

With the demands of the world, you find that your plate gets too full and your shoulders begin to ache from all of the stress. Taking one evening, one day, or one weekend can help with that stress. I try to take one weekend every couple of months and do something for myself. I have a caregiver that stays with my daughter at my house for the weekend, and I plan time away.

Recently, I have found a little remote lodge and retreat in a country side location in Idaho about two hours away from my home. I rented a cabin with my own screened in porch and personal hot tub. This was located directly next to a creek in a beautiful area full of trees and peacefulness. Now you do not have to go to the extreme of traveling far away or going to an expensive retreat. Maybe plan a weekend with a friend and go sightseeing, or stay in a nice hotel suite and catch a movie. Anything that you can do that does not require you to have any responsibilities of taking care of anyone else but yourself is the whole point of respite care.

Once when I took one of my weekends away, I signed up for a watercolor painting class in a mountain location. The drive there was beautiful and the fresh mountain air was relaxing. I came back home relaxed and excited about learning something new. Finding a craft or a hobby can help with decreasing any stress that one may feel. Finding that one thing that you truly enjoy will help put a smile on your face and take the stress out of your body.

What makes you happy? What are some of the things that you like to do that help you to relax? Are there any hobbies or crafts that you have always wanted to try, but have just never found the time to do? Take that respite care time and relax. Taking care of yourself is important, because you want to be able to be healthy so you can be around to take care of your special someone with cerebral palsy. Be happy. Make it fun.

About the Author

Denise D. Aggen is a single mother of two daughters who are 23 and 16. Her oldest daughter has cerebral palsy. She is a blogger and writer and is currently working on her Bachelor of Science degree in Psychology. She keeps a blog about raising a child with disabilities and a personal blog about “random things.”

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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.

Feeding Tubes for Nutrition and Medication

By John Lehman

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Sometimes, depending on the severity of the disorder, children with cerebral palsy have difficulties feeding themselves. In these cases, a feeding tube may be necessary for your child to meet his or her dietary and nutritional requirements. Feeding tubes could also be used to allow your child an easier way to take their medications. Learn more about how feeding tubes can help children with cerebral palsy.

When is a Feeding Tube Necessary?

There are several factors your doctor will consider before recommending the use of a feeding tube, including calorie intake or prolonged lack of weight gain. If calorie intake is not the issue, your child’s medications could be the culprit, as some medications can lead to vitamin deficiencies. In any case, your child’s doctor will evaluate your child’s nutritional needs and determine whether a feeding tube is needed.

What Makes Up the Formula?

Once the use of a feeding tube has been deemed necessary, the next step is determining what sort of food will be used. Your child’s doctor will likely consult with a nutritionist to decide on your child’s diet. There are a variety of options available for you. Doctors or natural food retailers can provide commercially made formulas designed to target specific deficiencies in your child’s diet. You can also make your own formula using a blender and ingredients your child’s doctor has deemed appropriate for your child’s dietary needs.

What is the Procedure?

The process of installing a feeding tube is known as gastrostomy. Depending on how long the tube needs to be installed, the surgeon will either install it through the nose leading into the stomach or directly into the stomach wall. Patients are often put under anesthesia, so the procedure should be painless.

Is Using a Feeding Tube Safe?

Using a feeding tube on children is the subject of some debate. Some medical researchers suggest that their use can lead to complications, including choking, bacterial infections and accidental inhalation of the formula (aspiration). There is also the possibility of organ ruptures, depending on where the device was installed. Keep in mind that it will be necessary to regularly clean the point of entry and ensure your child does not disturb the tube. If the tube is damaged or dislodged, it will need to be surgically replaced.

Despite these risks, research has shown positive results from the use of a feeding tube for children with cerebral palsy. A study was conducted in 1999 to determine the survival rates of children with cerebral palsy who had surgically placed feeding tubes. Of the 61 children, 90% saw improvement in their quality of life. Although it can be hectic to keep up with the schedule of maintenance and nutrition monitoring, the work will pay off by providing your child with a long and healthy life.

Further Reading:

Feeding Tube – WebMD

Feeding Tubes – LiveStrong.com

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