Don’t Hesitate to “Bother the Doctor” During Holidays

CP Family Network Medical Director Giles Manley, M.D., encourages parents to trust their instincts and contact their doctor if something seems wrong with their unborn child or infant over the holidays. He described a recent case where delayed medical intervention resulted in cerebral palsy:

I settled a case recently where a pediatrician sent an infant with severe jaundice home on New Year’s Eve with instructions to the parents to “check back in 2-3 days.” The baby had elevated levels of bilirubin in the blood, which is a sign that the liver is not cleansing the blood like it should, and is a serious condition if not treated quickly. The delayed treatment resulted in brain damage to the child.

So I always remind expectant parents, stand up for your rights as a patient over the holidays. If you think there is an issue with your pregnancy or your newborn baby, don’t let health care providers put off tomorrow what should be addressed today. If your doctor will be out of town, make sure you have his cell phone number and the name and phone number of the doctor who will be filling in for him or her. Then, don’t hesitate to use it if anything seems unusual.

To see a list of symptoms that warrant contacting your doctor, read Don’t Hesitate to “Bother the Doctor” During Holidays.

For more information please visit:

http://www.cpfamilynetwork.org

Finding Justice for Bailey

By Terresa Gaither

Mothers’ Day will always be a mixture of joy and sorrow for me. My son, Bailey, was born on this day, May 9, 1999, and I’ve been blessed by his existence every day for 13 years.
It was also the holiday that my doctors and nurses delayed too long in delivering Bailey, resulting in brain damage.
For a long time I blamed myself and God. I kept asking, “Why me?” Then, a very special person in my life told me that God gives special babies to special people. I feel honored to be the mother of a child with disabilities.
I ended up filing a lawsuit over Bailey’s birth. According to my suit, my doctor and nurses were negligent in continuing to give me larger and larger doses of Pitocin (a drug to induce labor), even though Bailey was showing signs of fetal distress. As a result, Bailey suffered “severe and permanent neurological damage,” by the time he was born, my lawsuit notes.
The doctor used a vacuum extractor to deliver Bailey, who weighed 8 pounds 15 ounces and was 21 inches long. I suffered major blood loss and third degree vaginal tears, which required surgical repairs, my suit documents.
According to my attorneys, the doctor should have come to the hospital sooner and delivered Bailey by C-section.

Normal Pregnancy Turns into Nightmare

Bailey was immediately transferred to the NICU at another hospital nearly 60 miles away. I remember before he left, getting to see him for 5 minutes, long enough to tell him I loved him. I wasn’t even able to touch him. You can’t imagine how hard it is to lay in a hospital bed while your son is in another hospital over an hour away fighting for his life.

Specialist Raises Questions About the Birth

Since that day, my husband, David, and I have had to fight for Bailey, who has mixed spastic dynostic cerebral palsy. He cannot speak, walk, sit up or feed himself.
The diagnosis took a year and a half and came from a specialist at a larger hospital near our small town in Alabama. He looked through Bailey’s medical records and, after telling us Bailey would always need specialized care, asked us if we had thought about getting an attorney.
We discussed his question all the way home and we made a decision together to start pulling Bailey’s medical records. It took me three months just to get the records from the hospital and the medical practice.

Persistence Leads to Janet, Jenner & Suggs

The first law firm we contacted kept our files for two years before saying they weren’t equipped to handle the case and that there wasn’t any negligence. The second law firm concluded the case was too big for them to handle, but advised us to keep pursuing legal action.  
At this time, we felt like giving up. It was my mom who wouldn’t let us, encouraging us to push forward.
While researching a special education class for Bailey on the Web, an advertisement for Janet Jenner and Suggs’ law firm caught my eye. I filled out the short contact form and within two weeks, a nurse called and asked me detailed questions. The firm took the case.
Because of a confidentiality agreement, I can’t disclose what happened with the case. But, I can tell you it was a long, drawn out process. But JJ&S attorneys kept us in the loop and assured us every step of the way.
Ken Suggs wasn’t just our attorney, he became our friend. We could tell he really cared about Bailey and we feel honored to have this remarkable attorney in our son’s corner. He’s the kind of attorney who is passionate about speaking for the kids who can’t speak for themselves.
About our case, Ken said, “It was obvious from looking at the medical records that standards of care weren’t followed. Typical of these cases, it wasn’t a single mistake, but a series of missteps and miscommunications that led to the outcome. The firm connected the dots, using the medical and legal expertise it is known for. Bailey and his family have a special place in my life, and always will.”

Bailey is the Joy of Our Lives

Bailey loves to go to school, play outside and spend summers on the lake. But what he enjoys the most is spending time with his brother, Cody, and his grandpa, Wes. He’s just a regular boy trapped in a body that doesn’t allow him to do the things he wants.
No matter what kind of a day we’ve had, Bailey can always make it better just by smiling. He is the joy of our lives.

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Dr. James Klausner: Conductive Education

September 12th, 2012
By Danielle Torrent
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James Klausner wasn’t looking for an additional career when he decided to start a rehabilitation program for kids with Cerebral Palsy. He already was quite busy with his day job as a lecturer at University of Florida and a physicist. It would be enough to nominate him for the Spirit of Gainesville award for his work as a professor. But he wanted to help kids in Gainesville, kids just like his son, who passed away at age six. He wanted to make them mobile, more independent, educated and accomplished. Hopefully, he would help them walk. In 2006 he started The Gainesville Conductive Education Academy. With a program modeled after the world famous Peto method, James Klausner took on a second day job without pay. He never turned a child away and as the head of The Jordan Klausner Foundation created in his son’s memory he tried with all his might to balance his need to help the local community with ever limiting funding to keep the facility running. Conductive Education is a method very little known in America, but quite popular worldwide, especially in the 1980′s. It doesn’t enjoy the financial support of insurance or the recognition of the US medical community. Conductive Education was developed in Hungary in the 1940′s. The theory behind was that people with neuromuscular disabilities can learn and improve through routines, movement and repetition. James wanted for the parents in Gainesville to have it as an option, to have the information and then make choices. He created an Academy that was free for most, affordable for the rest and he persuaded a Hungarian conductor, Kata to join his cause.

Dr. James Klausner

25 years ago I was just like the kids James Klausner has helped in Gainesville. I know what it did for me. I know what it’s like to fight with limitations of your own body only to raise above it and get better. Today I’m an attorney. Cerebral Palsy never goes away, of course I can see, but you can limit the way it affects you. That’s what James Klausner tried to do, against the odds, by bringing the approach that helped countless kids to Gainesville. To give them the gift of mobility. And also to start the discussion about the education and therapy choices in America and how we view Cerebral Palsy today. He didn’t make CE widespread, but he got his foot through the door.

This is our last chance to honor Dr Klausner’s efforts. After years of struggles the school has shut down this year. I know it was not an easy decision for him. It’s not that Cerebral Palsy is no longer a concern in Gainesville, but the logistics, the finances, the economic crisis we all live in, finally became too much for this one person, who tried to make a difference. He sacrificed a lot of personal time, energy and money. He thought of others first.

Last year I was nominated for the Spirit of Gainesville award, for my work with the school. But James is the true champion of Conductive Education. I’m just a success story. He has inspired me to help others like me. At the school little miracles happened daily. Yet, the media mostly ignored him. This is our chance to correct it. The school has closed but his efforts were not a failure. Not to his students, his other students, those who now walk, speak and move. Not to me, as I build by career around disability law issues and all the others he has touched. The school has closed, but the Foundation will continue, James assured me. For Jordan and for other kids in Gainesville.

Second Nomination

By day, James Klausner plays the role of what many people would call a rocket scientist. A professor of mechanical and aerospace engineering at the University of Florida, his research in thermal fluid sciences has landed him positions on panels for NASA and the National Science Foundation, and resulted in numerous awards and recognitions for his theoretical and experimental work on heat flow transfer. But the rest of the time, Klausner is focused on improving the lives of children with neuromuscular disabilities in Gainesville and surrounding areas.

In 1999, he established the Jordan Klausner Foundation in memory of his son, Jordan, who was afflicted with cerebral palsy. The foundation is a 501c3 nonprofit run primarily by volunteers that offers a range of services to the disabled community in North Central Florida, including educational opportunities for children, advocacy and legal services. It is mainly supported by parents and relies on grants, donations and McKay scholarships for funding. In 2006, Klausner opened the Gainesville Conductive Education Academy, a Florida charter school that combines rehabilitation and education to help children become more functional and independent. The key to Conductive Education is having children follow carefully designed scripts of exercises to make them stand, move and walk with the use of specially designed furniture that also serve as rehabilitation tools. The facility applies the therapy method developed in Hungary in the 1940s by Andras Peto. Over the decades, Peto’s Institute in Budapest has become a popular destination for Cerebral Palsy parents from all around the world, with many witnessing great progress in their children’s walking, talking and other functionality skills. The Gainesville Conductive Education Academy’s instructor, Katalin Szcoboda, received training for this method in Hungary. The school’s goal – unlike the outcome of many public schools, which results in disabled children becoming dependent on wheelchairs and classroom aides – is for children to become as independent and as functional as they can be. The Jordan Klausner Foundation’s motto states: “Helping special children help themselves.” The school operates year-round, providing otherwise unavailable educational options for North Central Florida’s population of children with disabilities and their families, with the ultimate goal of incorporating students into the public school system. Students have commuted from Orlando and as far north as Georgia to participate in the academy’s summer camp, as there are no other Conductive Education facilities available in the area.

Cerebral Palsy is an umbrella term for a number of neuro-motor disorders involving brain injury at birth or during pregnancy. An estimated two-to-three live births per thousand are diagnosed with the condition, with some studies suggesting raised rates in recent years. It affects children in all countries and all social groups. The condition mostly affects walking, control over limbs, balance and speech and in most cases, renders the body spastic. James Klauser has devoted an immeasurable amount of time and personal sacrifice to get the foundation and school off the ground, organizing fundraising events, applying for Federal grants and ensuring the students have a safe, welcoming facility to attend. He is committed to helping kids in the community and building a sustainable organization that will be able to help generations of families. For more information, please visit www.jordanklausnerfoundation.org.

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Making the Decision to Place a Child in a Residential Center

By Dana DeRuvo, R.N.

One in six children in the U.S. lives with a chronic disability. Some will be placed in a residential facility for long-term care. For parents of some children with cerebral palsy, this can be an excruciating and exhausting choice. I know this firsthand.

I made the decision to place my son Nicholas in a residential center when he was 10, although he didn’t move in until he was 12. By sharing my story and details on how the decision came about, I hope to help parents who may find themselves in the same situation.

Nicholas developed cerebral palsy as an infant as a complication of a heart defect. Every medical doctor told me they “were cautiously optimistic” that he would one day walk and talk. Of course, I wanted to think this would be true. I started him in a preschool program that served both typical and special needs toddlers, thinking this would give him the best incentive to overcome his challenges.

When Nicholas was six, I was a member of a counsel at our county Developmental Disabilities Services Organization. A mother there told us how she had placed her older school-age daughter in a residential program in another state. I was horrified. I could not – would not – even think about that as a possibility.

Nicholas attended a very good elementary day program at The Jesse Kaplan School in Rockland County, NY. He progressed well and was very much liked there. But as he got older and bigger, I knew he needed more social stimulation than he was offered at school and getting from home. He also needed more sophisticated technology to assist with different positioning options as he was getting too heavy for me to lift safely. I also knew that even if I had Oprah- or Bill Gates-type money, I could not provide Nicholas with the emotional and mental stimulation that a large, professional care center would offer.

Nicholas’ Doctor Weighs In

I sought advice from a trusted doctor, Nicholas’ neurologist, Dr. Bob Wolff. He told me that children like Nicholas, who could understand their environment but are nonverbal, tend to become clinically depressed. They may even require antidepressant medication if they don’t receive appropriate stimulation. When I heard that, I knew I had to do better for Nicholas, so I started asking about and researching options.

Years earlier, my brother, who is a teacher, had mentioned that a colleague’s brother was head of The Center for Discovery, a residential center about an hour north of my home. I remembered the conversation, although I wouldn’t even consider the thought at the time. Now, I had to think of the reality of my older daughter and younger son’s needs along with Nicholas’ requirements. Even though I had a good support system in place, the physical impact of caring for him was having a detrimental effect on all concerned.

Involving the School District

By law, school districts are required to offer an education to special needs children. If they can’t meet the child’s needs, they are required to pay the educational component of an alternative placement, until the child is 21. Therefore, the school district has a financial interest in any decision a family makes to put their child in a residential center.

The key to whether the district is meeting the child’s needs is contained in his or her Individual Education Plan (IEP). Many districts opt to keep students local to limit spending. Parents need to be assertive with school officials if they believe the goals of an IEP are not being met, and should insist on arbitration or even consider litigation if necessary. Fortunately, my school district was very supportive of my choices when it came to Nicholas’ need for placement.

Research and Placement

I researched The Center for Discovery, which I soon learned had earned a reputation as a model facility for people with disabilities. I spoke to parents whose children were already there, interviewed doctors, and visited the school and residential quarters unannounced. Everyone said the same thing: it was a great place. Many parents told me their one regret was they hadn’t placed their children there sooner.

I applied for Nicholas and we waited 18 months to be notified that there was an opening. It’s the call I knew we were all in need of but, at the same time, the one I dreaded.

I explained to my two other children that Nicholas was going to the “Ivy League” of college for himself, just like one day they would want to find the best fit for college for themselves.

It has now been almost six years since Nicholas entered The Discovery Center. Nicholas is thriving. Last year a young woman resident asked him to the prom! I, too, regret that I did not begin the process for placement sooner. The therapists are always trying new positions and equipment on him, and he has been very much embraced by the school staff and his housemates.

Of course, I never feel like I see him enough. I still get emotional when I leave him, but I have the same feelings about my daughter being in college and my younger son preparing for college.

I recently saw the mother who had placed her daughter in a residential program many years earlier. We laughed about how I had come full circle in my feelings. We learned that we had to put aside our emotions and think about what was best for our child, just like we do with our typical children.

Nine Tips for Parents on Making a Residential Placement

1. 1) Research the laws in your state. A good place to start is the National Dissemination Center for Children with Disabilities, which offers links to state agencies where you can get information and help.
2. 2) Find a location near you. You’re going to want to be close for regular visits and in case of an emergency.
3. 3) Check the facility’s reputation with doctors and referring agencies.
4. 4) When you visit the center, take along other friends and family members. Everyone will have a different perspective and will see things or think of questions to ask you might have missed.
5. 5) Ask the center for phone numbers of other parents whose children are there so you can contact them for their experience.
6. 6) Note how the staff handle your questions about safety and cleanliness. Are they defensive? Do they seem willing to cooperate with you? Drop in unannounced to see if you notice anything different.
7. 7) Check staffing ratios. Ask if there is 24-hour medical care available. How far away is the nearest hospital?
8. 8) If you live in an area without a lot of choices, consider getting involved at the center as a volunteer. You can observe what’s going on and even help expand activities offered.
9. 9) Once you make a placement, stay involved and supportive of staff. At many centers, staff members are often good-hearted and willing, but they are stretched thin. Make sure you give compliments and assistance as freely as constructive criticism.

More cerebral palsy information and other valuable resources for parents, families, caregivers and others are available from Cerebral Palsy Family Network.

Shriners help teen with Cerebral Palsy achieve dreams

August 1st, 2012

From http://www.dailyrepublic.com/

Isac Huddleston, 18, accomplished something recently that he and his family never thought possible: He walked to receive his high school diploma.

Huddleston has lived with spastic cerebral palsy his whole life. As long as he can remember, he’s walked with crutches and worn casts. Doctors told him he probably would never walk on his own, he said.

But with physical therapy, surgery and support, he handed his crutches to his friends, bound and determined to walk without them for such a monumental occasion.

“My friends told me to do my pimp walk and get my diploma,” he said, laughing.

His mother, Barbara Huddleston, cried while watching him from the stands at Rodriguez High School.

“It wasn’t the fact that he got his diploma,” she said. “It was the fact that he was walking.”

The Huddlestons said he would never have made such progress without the help and support of the local Montezuma Shriners and the Sacramento Shriners Hospital for Children.

Isac Huddleston was born prematurely, and at 3 pounds, 6 ounces, fit in the palm of his mother’s hand. As he grew up, Barbara Huddleston noticed he wasn’t developing normally.

“He didn’t sit up. . . . He’d cruise along the wall,” she said. “We really became concerned.”

His mother took him to the doctor to get diagnosed, but initially, they were left with few answers. When she finally received the news he had cerebral palsy, she was devastated.

“It was almost better not knowing,” she said.

Barbara Huddleston and her husband both had jobs and health insurance, but faced looming health care costs and struggled transporting their son to and from Sacramento for surgery.

That’s when Isac Huddleston’s grandfather, James Huddleston, directed them to the local Montezuma Shriners and the Shriners Hospital in Sacramento.

James Huddleston, a Shriner master himself, suggested they seek help through sponsors at the Montezuma Shriners.

Barbara Huddleston never thought that the group would sponsor her son because they had health insurance. To her surprise, they not only sponsored her son with free transportation to and from the hospital, but they significantly helped with the medical costs as well.

Ken Wright, ambassador and past president of the Montezuma Shriners, said that their organization is made up of dedicated volunteers. The Shriners, he said, don’t turn any child away, whether they have health insurance or not.

“Shriner loves taking care of kids,” he said. “We don’t want to see kids in wheelchairs and crutches if they can be helped.”

The enormous financial support from the Shriners was matched at the Shriner Children’s Hospital with personal and thorough treatment by its medical staff, Barbara Huddleston said.

Growing with cerebral palsy was difficult for Isac Huddleston, but he said he had some great experiences through the care he received at the Shriners hospital.

“There’s an uplifting spirit there,” Barbara Huddleston said. “They’re focused on making a good experience.”

One of Isac Huddleston’s favorite memories at the hospital was the East-West Shrine football game, where he hung out and played wheelchair sports with NFL players such as Jerry Rice.

Isac Huddleston proudly displays his Shrine Game memorabilia, including a football signed by former 49ers quarterback Ken Dorsey, in a case in his room.

His family has seen his condition improve by leaps and bounds over the years. Part of that improvement is thanks to the Shriners hospital, Barbara Huddleston said, and the other came from her son’s attitude.

“When I was younger kids asked ‘What’s wrong with you?,’ ” he said. “I said ‘There’s nothing wrong with me, I have cerebral palsy.’ ”

His mother said, “Rather than hide it, it’s been an educational experience for him.”

Isac Huddleston will head to University of Reno Nevada in the fall, where he will study environmental science. He said he would like to work with people with prosthetics and believes his experiences will allow him to help others.

As he heads to college, his mother said she is in of awe how far he’s come.

“Doctors had not expected his improvement to be as succesful as it was,” she said.

Without the support from the Montezuma Shriners, she said, she doesn’t believe it would have been possible.

“The Shriner support has come full circle,” she said. “We never know where he’ll go in life. That’s why we want to say thank you.”

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