Study Points To Treatment For Cerebral Palsy

By Shaun Heasley

April 16, 2013

A new technique being heralded as a breakthrough could have significant implications for the treatment of cerebral palsy.

Researchers say they’ve found a way to transform ordinary skin cells into brain cells that are missing or damaged in individuals with cerebral palsy and related disorders like multiple sclerosis. In such conditions, so-called myelinating cells — which help the brain send instructions to the rest of the body — cannot naturally be replaced.

In a study published Sunday in the journal Nature Biotechnology, scientists say they have successfully used the technique to alter cells from mice and are now looking to test it on human cells.

The approach dubbed “cellular reprogramming” is particularly promising, researchers say, because it relies on fibroblasts, a type of cell found in skin and many organs, that is abundantly available.

“We are taking a readily accessible and abundant cell and completely switching its identity to become a highly valuable cell for therapy,” said Paul Tesar, assistant professor of genetics and genome sciences at Case Western Reserve School of Medicine and a senior author of the study.

Noninvasive Brain Stimulation in Adolescent Cerebral Palsy Treatment

U of M Researchers Utilize Noninvasive Brain Stimulation in Adolescent Cerebral Palsy Treatment

April 11, 2013
By Brian Johnson

U of M assistant professor Bernadette Gillick, Ph.D., appeared on WCCO Radio to discuss how her lab, only one of two in North America, is testing a ground-breaking brain stimulation therapy on children with Cerebral palsy.

Gillick, who studies children who have had strokes before, during, or immediately after the time of birth, is implementing a new noninvasive technique on the child’s scalp to “excite” brain cells around the stroke area or equalize what’s happening in brain cells on either side of the brain to contribute to movement.

Her lab has recruited kids between the ages of eight and 18 years old, and so far, eleven children have met the stringent criteria to participate in the study with an end goal of having 20 children complete the study.

“I keep the criteria very strict because I want to keep the children as safe as possible,” Gillick said.

The brain stimulation treatment, which is painless, doesn’t have any severe side effects. In most cases, children haven’t reported any abnormalities.

“The most commonly reported side effect is a tingling sensation while brain stimulation is occurring,” Gillick said.

The therapy has shown positive effects on its participants. Kids who previously could not use their right arm are now able to brush their teeth with their right hand or even drive.

The most important thing when it comes to performing rehabilitation therapies with children, Gillick said, is to determine what their goal is.

The interview begins around the halfway mark.

To learn more about Gillick’s study please contact the Gillick Lab at 612-626-6415.

View original story.

Horseback Riding Can Treat Cerebral Palsy?

By John Lehman

View Similar Stories

It may surprise you to learn that horseback riding is one of the many treatments available for children with cerebral palsy. The treatment is called hippotherapy and it has been used to treat disabled children and adults alike since the 1960’s. Research has shown that hippotherapy has a positive effect on both motor function and emotional well being in children with cerebral palsy.

What is the Procedure?

Hippotherapy is usually conducted by a team consisting of a physical therapist, a horse handler and, in some cases, a speech/language therapist. The therapy often takes place at a horse farm, though there are also facilities specifically built with hippotherapy in mind. During the procedure, the physical therapist will be monitoring your child’s reactions in terms of balance and control, while the horse trainer will ensure that all safety precautions are taken. It is the horse handler who will also train both you and your child on how to properly ride the horse.

What are the Benefits?

The act of riding a horse forces the rider to match the rhythms of the horse’s movement. In this way, the horse’s natural movement helps the child with cerebral palsy match its rhythm and, therefore, reduce abnormal walking patterns. Studies indicate that the pelvic movement of a horse is similar to that of a human. With consistent riding, children with cerebral palsy could see improved motor function, muscle tone and balance.

Working in conjunction with a horse handler can also help your child improve his or her speech and language skills, as they hear and respond to advice and commands from the handler. Finally, the act of riding a horse can be empowering for patients, improving their self-esteem and emotional well-being.

Is it the Right Choice for My Child?

Of course, hippotherapy is not the best treatment for every child and it may not apply to your child’s specific needs. Your child’s doctor or physical therapist will have the best idea as to whether hippotherapy is the best option, either on its own or as a complimentary therapy. It is also important to note that health insurance typically does not cover this type of therapy.

There are always some risks involved with working with an animal, and hippotherapy is no different. Make sure that your child is outfitted with proper safety equipment such as a helmet or padding around their body. Your child should also carefully follow the instructions of the horse handler to ensure all safety precautions are taken. With adherence to the rules and safety guidelines, it is likely that hippotherapy will be a rewarding experience for both you and your child.

Join our family

Sign up for our free e-newsletter for more blogs, articles, and news about CP kids and their families.

Resources:

Front Range Hippotherapy

American Hippotherapy Association

Visual Issues in Children with Cerebral Palsy

By John Lehman

Studies have indicated that as many as 75% of children suffering from cerebral palsy have vision impairments of some kind. Sense of sight is an important part of a child’s development, and for children affected by cerebral palsy, detecting vision issues early is critical. Any information you can arm yourself with brings you closer to providing your child with a happy, functional life as he or she grows older. Below, we have identified several vision disorders in children with cerebral palsy and options to treat them.

Types of Vision Disorders

There are many different vision disorders that can result from cerebral palsy, although many share similar forms of corrective treatment.

Cortical Visual Impairment (CVI)

Perhaps the most common condition associated with cerebral palsy. Also called Cerebral Visual Impairment. CVI is categorized as more of a brain dysfunction rather than a direct problem with the eyes. Those suffering from CVI may experience symptoms such as frequent visual fatigue, abnormal responses to light, unusual eye movement, as well asother issues.

Acuity Loss

Acuity loss generally refers to blurred vision. The most common types of acuity loss are nearsightedness and farsightedness, both of which are typically treated by prescribing glasses or contact lenses.

Field Loss

This refers to a group of dysfunctions in the eye’s field of vision. Types of field loss include:

• Central Loss – Visual impairment in the center of the field of vision.
• Hemianopia – Visual impairment on either the upper-lefthand, upper-righthand, lower-lefthand or lower-righthand side of the field of vision.
• Island of vision – Most vision is missing, save for some isolated spots in various places.
• Peripheral loss – The sides of a person’s vision are missing. This is similar to tunnel vision.
• Scotomas – A reversal of “island of vision.” Vision is mostly clear, save for some isolated spots in various places.

Amblyopia

This condition is common amongst children with or without cerebral palsy alike. This condition is also called “lazy eye.” The eyes have difficulty processing depth of field and one eye will have poorer vision than the other.

Detection of Vision Issues

It’s very important to detect visual impairment in your child as early in their development as possible. As a parent, it’s very likely you will notice the signs before your doctor diagnoses a vision disorder at a routine check up. Common signs include frequent rubbing of eyes, difficulty tracking objects, consistent red eyes and other eye problems. If you suspect your child is developing vision issues, consult your child’s doctor or an optometrist as soon as possible.

Treatment Options

Thankfully, most of the vision problems related to cerebral palsy are very treatable and the procedures are not much different than treating common vision issues. Prescriptions for glasses with corrective lenses or contact lenses are common treatments for many of the vision issues children with cerebral palsy will face.

Children with cerebral palsy who have also been diagnosed with CVI usually face a more involved and routine treatment plan. At an earlier age, some doctors recommend vision stimulation therapies to ensure the best possible development of your child’s visual skills. If your child’s visual skills have not advanced very far before they reach age 10, it may be necessary to begin training your child to use non-visual ways of communication, reading and writing. These could include using text-to-speech software or Braille. Your child’s doctor or optometrist should be able to recommend a program based on your child’s specific needs.

Further Reading

Cerebral Visual Impairment – SSC

Vision Problems – WebMD

Join Our Family

Sign up for our free e-newsletter for more blogs, articles and news about CP kids and their families.

Understanding and Treating Epilepsy

By John Lehman

Some children who suffer from cerebral palsy have a chance of developing epilepsy, a seizure disorder brought on by brain injuries or certain neurological disorders. In fact, children and adults with cerebral palsy have a significantly higher chance of developing epilepsy than those not suffering from the disorder. Although there is still much to learn about epilepsy even today, there have been many advances in diagnosing and treating the condition.

Definition

Epilepsy is usually identified after the victim has received more than two randomly occurring seizures. When a person suffers from a seizure, the brain receives an overload of electronic signals powerful enough to disrupt normal brain functionality. This typically results in unconsciousness, involuntary muscle movements or spasms, emotional outbursts and loss of memory, though it varies depending on the person and the severity of the seizure.

Diagnosis

If you are concerned about your child having seizures, or your child has experienced his or her first seizure, set up an appointment with your doctor immediately. When children with cerebral palsy are experiencing seizures, a doctor can perform an EEG exam to assess their condition. Using a recording device, your doctor will scan your child’s brainwaves for abnormalities. Once the scan is complete, the data will be sent to a neurologist for analysis.

Types of Seizures

For those suffering from cerebral palsy, seizures associated with epilepsy are often categorized into two distinct types. Symptomatic seizures are identified as such when there is a specific, identifiable cause such as a disease or abnormality in the brain. Cryptogenic seizures, on the other hand, have no directly identifiable cause. These seizures are also known as idiopathic seizures. In these cases, doctors tend to look into the patient’s family medical history to see if the seizures are genetic.

Treating Seizures and Epilepsy

Once a seizure has begun, there is no way to stop it. Instead, the best thing you can do to help is to ensure your child is safe and comfortable. Clear the environment of potential hazards that could physically harm your child, as their uncontrolled movements could lead to cuts and bruises. Provide them with a pillow or a blanket so they may rest comfortably once the episode has passed. Contrary to popular belief, never attempt to stick anything in your child’s mouth when they are suffering from a seizure, as this could lead to serious injury (including choking or damage to teeth).

A single seizure is indeed a cause for alarm, but it may not be indicative of a seizure disorder. Remember that a doctor will likely not diagnose the condition as epilepsy if this is your child’s first seizure. In the case of a second or even third seizure, your child’s doctor will consider different forms of treatment, such as antiepileptic medications. If these do not prove effective, the doctor may recommend surgery.

There are other methods available to reduce the likelihood of a seizure occurring, including maintaining a healthy diet, keeping a balanced sleep schedule and exercising regularly. Your child’s doctor should be able to advise on which treatment is the best fit for your child’s condition.

Join Our Family

Sign up for our free e-newsletter for more blogs, articles, and news about CP kids and their families.

Doctors Using Cord Blood to Treat Cerebral Palsy

Have you considered storing cord blood for later use? Many children with cerebral palsy have benefited from this procedure. Read more about cord blood storage and the benefits in our latest "In the News" article.
http://www.cpfamilynetwork.org/in-the-news/doctors-using-cord-blood-to-treat-cerebral-palsy

Columbia Launches Center For Cerebral Palsy Patients

October 30, 2012
By V.L. HENDRICKSON

When Debby and Peter Weinberg’s son, Henry, was diagnosed with a rare form of Cerebral Palsy when he was 3 months old, the family was lucky to able to turn to the doctors at Columbia University Medical Center for care. But, as Henry approaches adulthood, he has far fewer options for care.
“Ninety percent of CP patients now live until adulthood,” Mrs. Weinberg said. “That wasn’t always the case. Now there’s a big population of patients living to adulthood and no one was focusing on them. The focus was always on pediatrics.”
“Cerebral palsy is a little bit of an orphan disease, and hasn’t attracted a lot of attention over the years,” said Mr. Weinberg, who is a founding partner at Perella Weinberg Partners LP, a global financial-services firm. The center is a collection “of efforts to help people with CP with their issues.”
Patients with cerebral palsy, a group of disorders that affects speech, movement and cognitive function, often need special treatment from doctors experienced with the range of complications that can arise from even routine operations. Mrs. Weinberg relayed the experience of one adult CP patient, in need of hip surgery, who was referred by an orthopedic surgeon to a pediatrician who had experience with CP. The pediatrician, of course, wouldn’t operate on an adult. Fortunately, the patient was able to get care at Columbia’s new center, which has already begun reaching out to the CP community.
In addition to providing treatment for patients of all ages, the center, led by Dr. David P. Roye Jr., the St. Giles professor of pediatric orthopedic surgery at CUMC, will also help coordinate care for CP patients, educate their families and caregivers and conduct research. Doctors will study the impact of various treatments, to see if they make patients “more mobile, more independent, more pain free,” said Mrs. Weinberg. “If they give patients a better quality of life—that’s the goal.”
In addition, a patient registry of CP patients has been established at the center, providing valuable data for doctors and researchers all over the country. “The patient registry is in its infant stages, but it’s already the largest in the country,” Mrs. Weinberg said. “Lack of data has always been a problem.”
Henry, the Weinberg’s son, is now 17 years old and thriving in high school. But the family, who live in Greenwich, Conn., is relieved to know he will continue to have access to the best doctors as he becomes an adult. “There’s a lot of anxiety on the part of parents as to where their children will get care,” Mrs. Weinberg said.
The new center, a celebration of which was also scheduled for Tuesday, but will be rescheduled because of inclement weather, will help alleviate that anxiety for families all over the New York region.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

Treatment has Potential to Reverse Cerebral Palsy

August 21st, 2012
From Norbert Herzog and David NieselSign up for our weekly newsletter!

A child’s symptoms can start with a weak or shrill cry, which seems normal enough. But then other problems appear, such as not being able to swallow or suck properly and having an overly floppy or stiff body.

These are early signs of a group of disorders called cerebral palsy, which is the No. 1 cause of motor disability in American children and affects more than 11,000 kids every year.

Doctors treat the lifelong symptoms with physical therapy and drugs, but are unable to reverse the brain damage, which happens in the womb for most cerebral palsy children.

Now, a study using a nanoparticle has successfully repaired damaged brains in rabbits with cerebral palsy. A research team engineered a particle small enough to deliver anti-inflammatory drugs to overactive neurons in the brain that are killing healthy cells.

Children with cerebral palsy have varying types of brain damage because of genetic mutations, maternal infections that affect fetal brain development, lack of oxygen to the fetus or baby or traumatic brain injury.

In many of these cases, two types of immune cells in the brain become activated — microglia and astrocytes. They protect the brain during infection and inflammation but damage the brain when they go into overdrive, destroying healthy cells.

Controlling neuronal inflammation presents a challenge because most medications can’t get past the blood-brain barrier.

R. Kannan led a group from Johns Hopkins University and Wayne State University that found a solution using a nanoparticle called a dendrimer, which is 2,000 times smaller than a red blood cell.

Kannan’s team affixed a powerful antioxidant with anti-inflammatory properties onto the snowflake-shaped particle.

When intravenously injected into newborn rabbits with an induced form of cerebral palsy, the drug-laced dendrimers made their way to the brain and were immediately swallowed by the overactive immune cells.

Within five days of treatment, the rabbits showed significant improvement, exhibiting motor skills similar to healthy rabbits. By comparison, rabbits treated with just the antioxidant, unattached to a dendrimer, showed minimal improvement even though they were given 10 times the amount.

An autopsy revealed the brains of rabbits treated with dendrimers had less scarring, less brain cell death and reduced inflammation.

They also had better preservation of myelin, a protective cover around nerves, which normally is stripped by cerebral palsy and other neurological diseases. This suggests the new treatment has the potential to reverse the disease.

Before human trials can begin, researchers must determine if the nanoparticle in this study is safe for humans, particularly children whose brains are developing.

There’s also the question of how long doctors have before cerebral palsy is irreversible in children. In most cases, cerebral palsy is diagnosed by the age of 2, but if newborns can be diagnosed and treated immediately, Kannan’s therapy might be invaluable to those young lives.

The study’s scientists already anticipate pairing the treatment with stem cell therapy to regenerate damaged nerve tissue in the brain.

Not only would this help newborns with cerebral palsy, but could also help people with other neurodegenerative diseases such as Alzheimer’s and multiple sclerosis.

Professors Norbert Herzog and David Niesel are biomedical scientists at the University of Texas Medical Branch. Learn more at medicaldiscoverynews.com.

Sign up for our weekly newsletter!

Parent Chooses Hyperbaric Oxygen Treatment for Cerebral Palsy Daughter

By Lisa Viele

Lizzy Viele

(Editor’s note: hyperbaric oxygen therapy is a controversial treatment for cerebral palsy. This is one family’s story about their decision to try it)

I was surprised to hear that he said, “I love you.” From just one round of treatments? His mom was beaming and could barely contain herself. “He can also sit up for 20 minutes all himself,” she said grinning. Now I was even more curious about Hyperbaric Oxygen Therapy treatments.

I just stood there. Speechless, in the church where we both take our children to the special needs ministry. It is the only church in our area that has it. Each child has a person just for them. My daughter, Lizzy, is a healthy and happy 11-year-old with CP and microcephaly. She has numerous disabilities and delays. She has never spoken a word. So when this mother said that her non-verbal son spoke those words, I will admit, I was jealous.

I want the best for my Lizzy. I didn’t expect to be here. By here, I mean a life with a child with so many disabilities. I never thought that I would be that statistic. Surprisingly, the numbers are not what I expected. Cerebral palsy affects about 1 in 278 children. That number is alarming. We are that 1 in 278.

Raising a child with CP, or any disability, is difficult. Throw in a couple more children, like we have, and parenthood can be downright impossible. Lizzy is spoon fed, in diapers, legally blind, has a seizure disorder, walks with assistance, and is non-verbal. My husband and I learned very early on that we must be as persistent as possible with everything pertaining to Lizzy. From medicines to school Independent Education Programs (IEPs), to current treatments that will benefit her. Hyperbaric oxygen therapy was “the current treatment” where we hope and pray our persistence will pay off.

HBO Therapy

What is Hyperbaric Oxygen Therapy (HBOT)? As it was explained to me, HBOT is a medical treatment that enhances the body’s natural healing process by breathing in 100% oxygen while in a total body chamber. Oxygen delivered this way dissolves more easily in the damaged parts of the brain. The Federal Drug Administration has approved HBOT to treat decompression sickness, gangrene, brain abscess, and injuries in which tissues are not getting enough oxygen. But it has not yet approved HBOT to treat cerebral palsy.

However, proponents of HBOT say it has been shown useful in treating oxygen starvation of the brain, known as hypoxia. Since full blood circulation to specific areas of the brain may be impaired, increasing the rate at which oxygen diffuses into all of the body’s fluids increases the amount of oxygen carried to the hypoxic brain tissues. Saturating cerebrospinal fluid with oxygen holds the promise of repairing any recoverable brain tissue that is intact but not functioning normally.

The use of oxygen treatment in a chamber dates back to 1662, when an Englishman named Henshaw created the first chamber. Each hyperbaric oxygen treatment is called a “dive.” HBO treatments usually last from 60 to 90 minutes. Some children may have more than one session in a day. The total number of sessions will vary, but it’s common for treatment to start at 40 over the course of several weeks.

HBOT Studies

There have been many studies on HBOT and I was please to find that there are no known side effects other than ear discomfort from the rising pressure in the chamber during treatment.

Hyperbaric oxygen therapy improves the quality of life of the patient in many areas when standard medicine is not working, according to this 2007 study in the Journal of Physicians and Surgeons. Conditions such as head injuries and chronic fatigue have responded favorably to HBOT. In studies, as documented in The Lancet Journal, increased oxygen intake and tissue saturation has shown promising results for children with brain injuries:

• Improved breathing

• New blood vessel growth

• Decreased swelling and inflammation

• Deactivation of toxins

• Strengthened immune system

In January 2011, the Agency for Healthcare Research and Quality (AHRQ) released a review of HBOT studies that basically concluded that there needs to be more study done. At the same time, the review noted “Although none of the studies adequately measured caregiver burden, study participants often noted meaningful reductions in caregiver burden as an outcome of treatment.”

HBOT Chambers

There are basically two types of chambers: monoplace and multiplace.

Monoplace chambers hold a single person and the whole chamber is pressurized with 100% oxygen. Multiplace chambers are designed to hold several people at one time and oxygen is delivered through a mask or a hood. During hyperbaric oxygen therapy the patient sits or lies within a monoplace (single person) or multiplace (multiple person) chamber, as the pressure is slowly increased to between 1.4 and 3 times normal atmospheric pressure, depending on the condition being treated. Oxygen is pumped into the chamber and accumulates at higher concentrations due to the increased pressure. Both the pressurization and increased concentrations allow the oxygen to dissolve more readily in the blood, lymphatic fluid, and the cerebrospinal fluid, which nourish the brain and spinal cord.

Cost

Fees for hyperbaric oxygen therapy can range from $150 to $1,000 or more per treatment, depending on the type of treatment center, physician consultation fees, and other factors. When I called around, I found that you could receive between 25-40 treatments in a “cycle.”  A cycle can cost from $5,000.00-6,500.00.

Medicare, Medicaid, and private insurers generally reimburse for the treatment of Federal Drug Administration-cleared indications and occasionally reimburse for the treatment of off-label or alternative indications. HBOT is not considered an accepted treatment for CP, so it is off-label.Reimbursement rates and criteria may vary widely by insurance carrier and by state or region.

That said, however, an on-line organization called MUMS Parent-to-Parent Network has reported success at getting some states to reimburse for this therapy. The MUMS website contains information about language within Medicaid laws that will support this reimbursement. According to the site, the language is found within the Omnibus Budget Reconciliation Act of 1989 in the EPSDT statute. (EPSDT stands for Early, Periodic, Screening, Diagnostic, and Treatment services.) The most important part of this document states:

Other Necessary Health Care – States must provide other necessary health care, diagnosis services, treatment, and other measure described in section 1905(a) of the Act to correct or ameliorate defects, and physical and mental illnesses and conditions discovered by the screening services.

The group says this passage has been used to win HBOT reimbursement in Missouri, North Carolina, Virginia, and West Virginia. In addition, MUM said that “Once they’ve been reminded of Paragraph 5 of the EPSD…Arkansas, Arizona, California, Hawaii, Kansas, Maine, Maryland, Michigan, Minnesota, Nevada, New York, Wisconsin, and Wyoming have all indicated they could reimburse HBOT should a Medicaid recipient in their states request it.”

Finding a Clinic

When I started the initial process of finding clinics or hospitals that did this treatment, I used the Internet. I wrote down about seven places. Some were out of state, which meant that we would have a long car ride or a short flight. The places that were out of state were only one or two states away. However, Lizzy does not do very well on long car rides and we have yet to take her on a plane.

Another issue that we might encounter is that Lizzy might be claustrophobic. We have no idea of what this may mean for treatments until we get into the chamber. She also doesn’t like anything touching her head, so a hood or mask might be a problem. We may have to accept the fact, going into this, that she may not be able to handle the treatment.

Each place I called I asked the following questions:

• How long have you been doing these treatments?

• Do you treat children with CP?

• Is it safe?

• Are there any side effects?

• What type of chamber?

• Can I be in there with her?

• Can she listen to her music while she is in there?

• How long are the treatments?

• How many treatments are included?

• How many treatments in one day?

• Can we go home for the weekend then come back?

• How often can we come back for another round of treatments?

Our Journey Begins

I was told that she would need a prescription for her pediatrician stating that she could receive oxygen treatments. Our pediatrician is very understanding and encouraging when we request something for Lizzy. She said she was very interested and would do what she could for us.

Our funding will come from our daughter’s trust, which we received from a jury award after suing our doctor and hospital for medical error, which is a whole other story. At the time, we had no idea what we would be facing.

Lizzy will begin her treatments this summer. We are so excited about them and are optimistic that she will benefit from them. When I heard my friend at church describe her son’s improvements, I knew that this was what we had been waiting for. It was not what we had prayed for or dreamed of. It was the hope that we had wanted to feel again.

Other Resources for Information

There are numerous resources on the Internet for you to read about HBOT. There is also an interesting video that was recorded in 2004 after a young man named Curt Allen, Jr. was involved in a serious car accident that left him in a vegetative state confined to a wheelchair. This was the video that made us move forward with getting these treatments for our daughter.

http://www.youtube.com/watch?v=nbFs9NN__Mk

http://hyperbariclink.com/

http://www.hbot.com/

http://www.cerebralpalsy.org/treatments/oxygen-therapy/

http://www.patientsmedical.com/treatmentoptions/hyperbaricoxygentherapy/cerebralpalsy.aspx

http://www.abin-pa.org/presentations/Medicaid_law_for_children.pdf