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.

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For more information on Cerebral Palsy please visit:
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Sensory Therapies for Children with Cerebral Palsy and other developmental delays

More avenues of hope for children with Cerebral Palsy and other developmental and behavioral disorders! This is a technical article and may have to be read twice to properly soak up all the information. The basics are that children with CP have major issues detecting and reacting to sensation. This can be as simple as knowing when to react when you put your hand on a hot stove. This research hopes to unlock areas of the brain that can be better trained and seasoned to sensation. Through this, the patient can begin to sense things correctly and in turn coordinate their motor functions appropriately.

For more information please read this article:

http://www.cpfamilynetwork.org/in-the-news/sensory-therapies-for-cerebral-palsy

GERD: One Mother’s Two-Year Struggle for a Diagnosis

IN THE TRENCHES – What a Parent Needs to Know About Gastro-Esophageal Reflux Disease

Like a lot of new parents of a child with cerebral palsy, I tended to think of CP’s affect only on muscles involved in movement and mobility. I didn’t consider CP’s possible impact on muscles that help gastric emptying, swallowing, bowel mobility and a host of other body functions. But I learned fast, and I learned the hard way.

From birth, feeding my daughter, Danielle, was always a long, painstaking ordeal. It often took up to three hours to feed one 8-ounce bottle of formula. Afterward, she would scream, arching with discomfort and no amount of burping or comforting seemed to help.

At first, I thought she was experiencing colic and consulted her pediatrician. He suggested she could be refluxing and ordered a Gastrointestinal Endoscopy study. It came back “reflux within normal limits.” When Danielle was about eight months old, we started nasal gastric (NG) tube feedings. Although this proved to better meet her nutritional needs with less effort on her part, she continued to show signs of pain and discomfort after feeding.

After using the NG tube for a year, I noticed Danielle had developed a cough, which her doctored diagnosed as a cold. After 3 months of dealing with the “chronic cough” I was still being told it was a cold. I said if that was the case, then the doctor needed to contact the Guinness Book of World Records because this “common cold” had lasted more then 3 months and she was now spitting up formula with the cough. That got his attention. He ordered more tests, and although they were inconclusive for reflux, they indicated a delay in gastric emptying. So, after18 months of using a nasal-gastric tube, doctors recommended Danielle undergo surgery to have a G-tube permanently implanted.

At first I resisted. I was adamantly opposed to any surgical intervention. I had seen children at my daughter’s school with the G-tube, and it was very intimidating to me, as was the thought of the procedure itself. But it became obvious even to me that our daughter’s quality of life was being compromised as a result of my fears and resistance. I knew we couldn’t continue to use an NG-tube for her feedings long-term; it was causing chronic irritation to her sinus cavity, and it was getting increasing difficult to insert the tube. The doctors said Danielle also needed a nissan fundoplication procedure, in which the top of the stomach is banded to prevent reflux and aspiration. I finally agreed.

After the surgery we learned the worst. The surgeon said she was shocked by the condition of my daughter’s esophagus. It was so damaged and eroded that she lost a lot of blood during the procedure. The cause? Two years of undiagnosed and unchecked reflux. Two years of pain and suffering. I was angry but not surprised. I knew something had been wrong.

The nissan fundoplication and G-tube placement turned out to be the best decision we could have made. It resolved the reflux and discomfort associated with it. The G-tube alleviated the all too frequent trauma of passing the NG tube, and best of all, it allowed our daughter to get the nourishment she needed.

Lessons Learned:

• GI studies can be misleading and subject to interpretation. Reflux doesn’t happen on command during a GI study.

• Follow your gut instincts. A parent knows their child better than anyone. If you suspect something is wrong, then you probably have cause for concern and you need to persevere until you get answers.

• You are your child’s only voice. Keep a journal, noting feeding regiments, times, volume of intake and description, time and duration of any adverse behaviors you may witness that make you suspect reflux or other GI issues. A journal may show a pattern and will help give your doctor insight.

• Consider making a video of what you see, again, to help the doctor understand what you and your child are experiencing.

Signs and Symptoms:

Reflux occurs when the sphincter (muscle) between the esophagus and stomach doesn’t work properly, allowing stomach acids to back up into the esophagus and causing a burning or heart burn sensation. In non-verbal children this may lead to range of behaviors after feedings:

• Obvious discomfort and irritability, including screaming, posturing and arching

• Coughing

• Spits of formula or food accompanied by coughing

GERD is especially difficult to diagnose in young non-verbal children. But if left untreated, chronic reflux can cause serious complications. Inflammation of the esophagus from refluxed stomach acid can damage the lining and cause bleeding or ulcers, also called esophagitis. Scars from tissue damage can lead to strictures, narrowing of the esophagus, that make swallowing difficult. This is what happened to Danielle.

There are medications and many non-invasive options for managing reflux and delayed gastric emptying. In severe cases like Danielle’s, your doctor may recommend surgical intervention.

Bottom line: You are your child’s best advocate. If you think there’s something wrong, don’t stop asking questions and challenging your doctor. They are not always right.

The following links at National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) provides FACT SHEETS and in-depth information on GERD:http://digestive.niddk.nih.gov/ddiseases/pubs/gerd/#1 Gastroesophageal Reflux in Infants

Gastroesophageal Reflux in Children and Adolescents

For more information please contact:

http://www.cpfamilynetwork.org/

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

Special Kids’ Worlds Open Through Mobile Apps

By John Hartford

Mobile communications technology for use by children with disabilities is exploding. New applications for children with movement, speech, hearing and visual challenges seem to appear daily on the market.  As a result of these new technologies, new worlds are opening for these children.   These devices and apps are providing children who experience movement and communication challenges with incredible tools for academics, communication and socialization

Most of these applications run on iPads or iPhones, although they also are available for other tablets and smart phones. Some encourage wrist and finger movements to help develop small motor skills; others make it possible for young children with speech challenges to communicate through the use of pictures.  Word and picture-to-sound applications give voice to older children and open up social interaction. Already in use by many schools and therapists, applications to assist children in cognitive skills building abound.

Most of these applications are fairly inexpensive. But you’ll need a device like an iPad, which costs about $500 new, to get started. While sifting through the many available applications can be frustrating, especially if you’re a “newbie” to the technology scene, there are a number of helpful websites that offer reviews and video demonstrations to help you choose. Here are some of the best:

Momswithapps – This first-rate site run by moms includes a section on apps for special needs. The moms work with software developers to fine-tune their products and encourage parents to give them feedback to make products better.

Apple Special Education – The special education section of Apple’s website lists 72 applications for the iPhone and 13 applications for the iPad in 10 categories ranging from communication to emotional development and life skills

About.com Apps for People with Special Needs – This site offers reviews from parents and users of applications for iPads and iPhones.

Apps for Children with Special Needs – This site provides videos of many applications, allowing parents to see how they work before buying. It also offers an extensive list of free applications.

Babies with iPads – Focuses on infants and toddlers with developmental delays and how technology can help build basic skills. A recent article lists a therapist’s top 10 applications for children with cortical vision impairment.

The Friendship Circle – Offers a wealth of resources for special needs community, including a list of applications for Android devices.

Of course one of the best ways to choose an application is to ask your child’s therapists and teachers what they recommend.  But no matter what you choose, today’s mobile software applications are making it possible for children with cerebral palsy to interact with their world better than ever before.

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