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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Gray Matter Grows in Brains of Children with Cerebral Palsy Following Therapy, Study Finds

BIRMINGHAM, Alabama — What’s a little gray matter between researchers?
A lot, it seems, as University of Alabama at Birmingham scientists become the first to show that a certain type of rehabilitation can remodel the brains of children by adding gray matter.
The findings are published today in the journal Pediatrics.

The study focused on 10 children who were given Constraint-Induced Movement (CI) therapy over a course of three weeks. One MRI was taken three weeks before the therapy; one right before therapy started; and the last one after it was over, said Chelsey Sterling, a graduate student in medical psychology and first author of the study.

“Following therapy we saw increases in the kids’ gray matter in the sensorimotor cortices  and in the hippocampus,”  Sterling said. “We don’t know exactly the cause, but it is correlated with improvements in motor skills.”

Gray matter is part of the central nervous system and is made up of neurons, glial cells and dendrites
One of the study’s co-authors, Gitendra Uswatte, described gray matter as the brain’s computer chips, and the therapy adds circuits to those chips.

Constraint-Induced Movement therapy was pioneered by Edward Taub in stroke rehabilitation. Taub is a university professor in the UAB Department of Psychology and co-author of this study.
CI therapy involves constraining the good limb so that the subject is forced to use the impaired limb.
For this study, researchers focused on children who had hemiparetic cerebral palsy, or CP that primarily affects one side of the body, Taub said.

The children’s good arm was placed in a cast to induce the restraint.
But the restrain aspect is only one small part of CI therapy, Taub said.
Successful therapy also involves the continuation of work at home involving family members to help the child focus on daily living activities: brushing their teeth, combing their hair and putting on shoes.
It’s not always easy, Taub chuckled, remembering when one child was asked to do something.
The child responded: “I have CP. Hasn’t anyone told you!”

While the study found a correlation between the increased gray matter and improved motor skills, it’s too early to which one caused the other, researchers said.
“The brain change could cause the motor improvement or the motor improvement could cause the brain change,” Taub said.
Uswatte is preparing to embark upon a study which may get closer to answering that question.
In the pending study, researchers would combine CI therapy with the administration of Prozac, or fluoxetine.

The study, he hopes, “will go some way to showing there is a causal relationship.”
Unfortunately, Uswatte said, the $2 million grant for the study is on hold due to sequestration – that series of automatic budget cuts directly caused by Congress not agreeing on a budget.
“There’s lots of research that is ready to go that can help people and help patients that can’t be done because of the stalemate over the budget,” Uswatte said.

Jack Carroll, 14-Year-Old ‘Britain’s Got Talent’ Contestant And Comedian, Is Our New Hero

From The Huffington Post

“Dont worry, I know what you’re thinking: Harry Potter’s had a nasty quidditch accident.”
Fourteen-year-old Jack Carroll opened his audition for “Britain’s Got Talent” with this line, and the act that followed was easily one of the most memorable — and hilarious — of the popular British reality show. The young aspiring comedian has cerebral palsy and faced Simon Cowell and the other judges using a mobility aid on last week’s episode.

But the teen didn’t want his cerebral palsy to be what he called “the elephant in the room.” Instead, he used his short stand-up routine to poke fun at himself and the challenges he faces having a physical disability.

When the teen finished, he received a standing ovation from the audience and judges, and David Walliams called him a “comedy genius.” Watch Jack’s incredible performance in the video above.
“A lot of times in comedy, your weaknesses are your strengths,” he explained backstage, adding that his other strength was “bring[ing] joy to the world.”

We couldn’t agree more. Jack, you rock.

Was My Daughter’s Cerebral Palsy Preventable?

By Ellen Robertson

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Every parent of a child born with a brain injury asks themselves, “Was my child’s birth injury preventable?” Very few find the answer to that question. Why? Many times, they’re convinced by the physicians and other medical personnel involved in their child’s delivery that “these things happen.” How many parents actually take the steps to investigate their child’s birth in spite of assurances that their child’s birth injury was “unavoidable?”

Taking on Goliath

I remember having a conversation with a family member several months after our daughter was born. My daughter suffered a severe neurological injury at birth due to “complications of unknown origins.” During this conversation with my cousin, he suggested that I should have my daughter’s birth investigated. He also suggested that if investigators found that my daughter’s injuries were “preventable,” that I should sue for damages. I reminded him that he was suggesting I take on Goliath! I would not be suing a small, home town hospital. I would be suing one of the largest entities in the free world! I laughed at his suggestion and asked him if he knew any really, really good lawyers who would take such a case! I dismissed his suggestion and our conversation.

Making the Call

Fast forward almost 3 years. While watching television one afternoon, a commercial came on.  It was a malpractice law firm with an advertisement about cerebral palsy and birth injuries. I don’t know why, but I tuned in to that commercial, as voices from the past filtered through my mind. The conversation I had with the Attending Pediatrician the morning after my daughter’s birth was as clear in my mind at that moment as it had been that morning 3 years previous. The words “this was preventable” echoed through my mind. He had explained to me that, had the staff used a fetal heart monitor during my daughter’s delivery, they would’ve seen her distress and been able to physically stop the vaginal delivery and perform an emergency C-section, possibly preventing the severe birth injury she sustained.

As I copied down the 800 number, the doubts and inhibitions crept in. I remembered the conversation I had with my cousin and the disturbing reality of what I was contemplating started to set in. Did I really want to take on this fight? Would a lawyer even take our case? I didn’t know. I knew one thing though, we had nothing to lose! My daughter was severely brain injured and I wanted answers! It was already becoming evident, as early as 6 months of age, that my daughter’s brain injury was going to have a profound negative impact on her life. I wanted to know exactly what happened during those 40+ minutes that robbed my daughter of a normal life. I made that call.

Getting Answers

I had no knowledge of “statute of limitation” laws, but learned in my discussions with the lawyer that we were just 3 months away from the statute of limitations expiring. The resulting investigation by our lawyer provided the answers I needed. It was found that my daughter’s birth injury was the result of gross negligence on the part of the medical staff involved in her delivery. The negligence was such that our lawyer told us he was prepared to take our case to the Supreme Court if we had not won. As it turned out, we did win the case, and the ensuing settlement helped to provide a level of care and quality of life for our daughter that would not have been possible otherwise.

If your child was recently diagnosed with a neurological injury that you suspect occurred during their birth and you don’t have the answers you seek, MAKE THAT CALL. It may make the difference between you having to fight for services for your child their entire life, or being able to provide all the services and interventions they may need without government restraints or restrictions.

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Margaret Jones Conference on Cerebral Palsy Forum

Do you live in Southern California? Interested in trying out XBox technology for our CP kids? On Saturday, April 20, a family forum will be held at UCLA Santa Monica Medical Center where you will be able to play with this new technology. CP Family Network has been watching this project and provided support for the CP Research Foundation and UCLA to build this technology. Make your reservation soon so you don’t miss out on this great opportunity! 

http://www.cpfamilynetwork.org/blogs/margaret-jones-conference-on-cerebral-palsy-forum

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.

Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

• Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
• Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

Selective Dorsal Rhizotomy: The Right Treatment for Spastic CP?

By Lee Vander Loop
CP Family Network Editor
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The surgical procedure known as Selective Dorsal Rhizotomy (SDR) has gained considerable public attention within the cerebral palsy community. It is a neurosurgical procedure performed with the goal of improving motor function by decreasing spasticity in children with spastic cerebral palsy. Numerous news articles have published stories of children who have experienced life-altering benefits from SDR surgery, such as regaining the ability to walk after being confined to a wheelchair since birth.

What is Involved?

Spastic cerebral palsy, left untreated, can have a severe impact on a child’s development and can lead to serious musculoskeletal deformities. Spasticity is caused by abnormal nerve impulses traveling down the spinal cord. Selective Dorsal Rhizotomy aims to correct this through neurosurgery at the spinal cord level.
During an SDR procedure, surgeons identify and cut selected dorsal nerve roots in the spinal cord that are responsible for abnormal movement in the lower extremities. These nerve roots are identified using electrical stimulation. Identifying the correct nerve roots is vital. If nerve roots coming into the spinal cord from the skin, bladder or bowel are cut, then the patient may develop numbness or bladder or bowel incontinence.
Just as every child’s level and severity of spasticity is unique, every child’s surgery is also unique. Some children may only need 10% of the designated nerves cut where another may require a higher percentage for positive results.

Eligibility

There are strict criteria used to determine a child’s eligibility for Selective Dorsal Rhizotomy. A multi-team assessment is made which typically includes a physiotherapist, a pediatrician and surgeons. The procedure is usually recommended for young children with CP spastic diplegia without dyskinesia or ataxia. Additionally, children who are without significant cognitive disability and those with a walking capacity within reach are considered candidates. This is an extremely complex surgery, and like all surgeries, presents risks. Parents need to be made aware of all the factors involved in this potentially life-altering procedure.

Benefits of SDR

• Reduces or eliminates the need for long term pharmacological intervention, such as muscle relaxants and antispasmodic medications.
• May offer immediate reduction in muscle tone in adductors, hamstrings and dorsiflexors with no recurrence of spasticity.
• Reduced need for other orthopedic surgeries to correct joint contractures.

Risks of SDR

• The procedure is irreversible.
• Post operative weakness and loss of some motor ability have been noted.  Intense physical therapy is required to regain strength and mobility.
• May lead to deterioration in walking ability or bladder function, or later complications including spinal deformity.
• Commonly reported post-op side effect includes abnormal sensitivity of the skin on the feet and legs lasting up to 6 weeks.
• Prolonged physical therapy (specifically physiotherapy) and aftercare is required.
• Additional surgery may be required.
• The full benefits of SDR may not be realized until up to a year after the surgery.
• Possibility of excessive weight gain. (I found this weight gain side effect to be true with my own daughter. As a result of significantly reducing her spasticity with ITB therapy (Intrathecal Baclofen Pump) she gained 40 lbs in the first year after the pump placement!)

Is SDR Right for Your Child?

If you believe your child may be a candidate for SDR surgery, speak with your child’s pediatrician, therapists, orthopedic specialist and neurologist.  Be prepared for the long haul.  Gather all the information you can.  Make lists of every question that comes to mind.
As with any major surgery, there are risks and threat of complication. Do the research to ask the right questions!As you research, write down questions and concerns that you encounter in your reviews. Think of all the details of pre-op, the initial surgery, post-op, long term rehab, therapies, pain management, educational needs and adaptations, mobility, assistive technology needs post-op, and other issues of importance that may come to mind. Remember the only “dumb question” is the one you don’t ask!
Further Reading:
Long-term Outcomes Five Years After Selective Dorsal Rhizotomy
Selective Dorsal Rhizotomy
Growth in Children with Cerebral Palsy during Five Years After Selective Dorsal Rhizotomy: A Practice-based Study
About Selective Dorsal Rhizotomy

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Learning to Embrace Life’s Little Moments

By Julie Ufema
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The holidays brought me an unimaginable gift this year. One that I never could have anticipated.
My Mom drove in from Maine and was able to join me as we volunteered to be ‘room mothers’ for my son Dane’s Christmas party. She was thrilled. I, admittedly, was apprehensive to say the least.
Earlier this year I was able to spend a day in the life of a kindergartner when my son’s home health aide called off sick, and although an invaluable experience, by the end of the day I was exhausted and happy to head home. But this would only take a couple of hours, and was a party to boot! I love a good party. How tough could it be?

Let the Party Begin

We walked into the classroom and all heads turned in our direction. Everyone now knew that I was Dane’s mom, an avid, amateur photographer and always willing to do something slightly unorthodox to meet my son’s special needs – two things that five-year-olds find highly entertaining.
The ‘head’ room mom announced that we would be making a Christmas ornament, reading a story and then playing some games. That seemed easy enough.
My mom and I set about opening up Popsicle sticks, squirting glue and sticking googly eyes where they belonged. Dane’s snowman looked like it was melting, but he’s never been one to follow the rules and I have never been one to make him.
The story was delightfully uneventful. The children all sat ‘crisscross-applesauce’ and listened with bated breath to find out if ‘Grumpy Santa’ would snap out of his funk and finish delivering his toys to all the good little girls and boys.

Game Time

Next up – the games! Dane squealed with delight and clapped his hands. A moment of terror swept over me. What games? How hard could they be? Dane has cerebral palsy, limited use of his hands and is in a wheelchair. It just hadn’t dawned on me that these ‘games’ might fall slightly outside of his wheelhouse. I so often forget that Dane is any different than anyone else that reality sometimes sneaks up on me.
And boy was this one a doozy! We were to push a Styrofoam ‘snowball’ the length of the classroom (and back!), with a wooden spoon, in an all-out, head to head relay race. When it came time to split into teams, I tried inconspicuously to hang back with Dane. Not a chance. The excited students pleaded with us, “Come on Dane!” “Dane, come be on our team!” “No, he’s closer to our side.  He should be on our team.”
As it had time and time before, my heart sank. I thought quickly, grabbed a piece of paper, rolled it up into a cone and handed it to Dane. “Here,” I said confidently.“You can be the director!”
My mother and the aides looked relieved. That should work for sure! Dane had definitely inherited my bossy pants gene and this should totally satiate his need to participate.
No dice. Out came the lip.
Before the first tear could fall I hurriedly unbuckled him from his wheelchair, mustered up all the strength I could, grabbed my 4-foot, 50 lb. baby boy and carried him over to the end of the line.

Part of the Team

Our turn came. I grabbed the wooden spoon, swooped down towards the ‘snowball’ and gave it all we had. I managed to give the ball one pretty decent whack, and with a couple more awkward and labored dips to the floor, we were just able to stumble across the finish line, dead last, to a raucous round of applause.
As I looked around the room I saw laughter, empathy and maybe just a little disbelief. I looked down at Dane and he grinned ear to ear. Panting, I trudged back over to my mom who quickly pushed Dane’s chair into position. She was smiling too.
She leaned into me, “We could see your bum.” She giggled.
“Won’t be the last time!” I laughed.
And it won’t be. I decided that from that day forward, I would attend all of Dane’s parties, not to protect him from disappointment, but to celebrate the moments that pass too quickly, often unseen by the adult eye. And if I have to show a little bum in the process, so be it. I’d rather teach my kids that to participate and risk looking foolish is always better than not participating at all.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows. Find her at www.julieufema.com and www.facebook.com/JulieUfemaWriter.

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