Young child with cerebral palsy in wheelchair tosses a bean bag at a yellow matt in front of them.

Field Day 2014-Maya tells Mom, “I’m going, so stop pushing the issue!”

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When will this mom ever learn?

In my attempt to protect Maya I told her teacher that we would not be attending the school’s Field Day today. I planned to make an alternate fun activity day for her at home. She was not very happy with me when she found out. We talked about it and I shared my concerns including something that happened this past weekend.

We went to our friend’s house and when we arrived the family was in the backyard. Maya became very upset and said she didn’t want to go back there and instead preferred to go into the house. When I asked her why she told me because there was nothing for her to do in the yard. Hearing these words and knowing she was starting to openly process what it’s like to be left out hurt me deeply. But in this case I actually disagreed with her, because she had always been able to find something fun to do here. We went back to see our friends and she decided she wanted to stay there for a while and hang out on the trampoline. Any thought or feeling about not being able to find something she could do seemed to have left her. But it didn’t leave me. It was the first time I had heard Maya clearly articulate her feelings about being left out. So, on the following Monday when the email from her school Principal came around that they were having a Field Day this week I thought to myself, “No way”.

But I was wrong. What happened the other day was not carrying over for Maya into how she was thinking about Field Day. I figured this because she didn’t know what activities they would have. So I  went on to explain more about Field Day to her. It didn’t matter. She made it very clear to me that I had crossed a line and she absolutely would be attending. When I told her we would have a back up plan if it didn’t work out she turned to me, clenching her teeth and said, “Mom, STOP PUSHING <the issue>”!

I was a bit surprised and perhaps shocked by her response. I didn’t want her to feel left out, left behind, or sad. I had the best intentions.
But, what Maya wanted was to be able to make her own decision. I actually think this was more important to her than whether she participated in Field Day. One of my personal rules in navigating new circumstances or activities with her has always been to present the options and we discuss them together. I violated that rule in this case. I figured she didn’t know what she was getting into and I didn’t feel that I could make potato sack races, speed games etc work for her.

She was angry. She gave me a laundry list of ways she would make this work for herself.

I really goofed. My own child was pleading her case for inclusion. 🙁

Well, I made it right. Last night I called her teacher and e-mailed the school Principal that she would be attending and I would be there to volunteer. I also promised her that I would once again not make decisions about her participation in activities without her being involved. And I realized that what she feels may vary from one day to another. Some days she may feel like being creative and having us adapt activities and other days she may say “No, thanks”. But ultimately, the choice is hers. That was the take home lesson for this Mom.

So look who had a great time at Field Day…

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CVI

CVI Part Two: Dr. Christine Roman’s CVI Range Assessment

brainplasticity

Since writing the first part of this series I have had the pleasure of speaking with Dr. Christine Roman the developer of the CVI Range Assessment. I also have done my best to perform this assessment on Maya. The CVI Range has a 0-10 scale, and describes three broad phases of visual processing development. Where the child falls on the range corresponds to the types of interventions used to help the child improve his/her visual processing skills.

Based on my evaluation and observations, Maya has CVI and it is impacting her ability to learn. In fact, currently we are approaching an area (Phase III) where she is stuck unless we have further support. Until now, I knew Maya had problems with visual processing but did not understand much about them, nor could I find anyone who could help us make sense of them. Since hearing Dr. Roman speak, reading her book, and going through the CVI Range Assessment, I have a much better understanding of her challenges and may actually be able to help her progress in these specific areas. It’s a rare moment of raising a child with a brain injury where we have a plan!

I now understand why despite repeated eye exams, vision therapy (which was focused upon eye exercises aimed at resolving ocular impairments) and prescription adjustments, Maya still has problems seeing. One particular issue that escaped me was that Maya has difficulty recognizing faces, a condition on its own referred to as prosopagnosia. This is something I found particularly disturbing because I thought Maya’s quirky sense of humor was leading her to repeatedly ask people she knew to tell her their names. After hearing Dr. Roman mention problems with facial recognition as a symptom of CVI, I started to cry, realizing that potentially something more serious was going on with her vision. This issue alone could impact Maya’s relationships with peers and adults, as well as create confusion for her throughout the day. In fact, some of her teachers had picked up on this and had started to wonder if she was purposefully ignoring them.

The possibility of being able to take action and help Maya drew me further into learning more about Dr. Roman’s work. Particularly encouraging for myself and other parents is that Dr. Roman believes parents often intuitively cater to their child’s visual needs. Looking back some of the things I have done to help Maya process visual information is on par with the strategies Dr. Roman presents to help children improve in Phases I and II (Phase III becomes trickier). In fact, Dr. Roman told me that parents have approximately 50% of the information needed to perform a CVI Range Assessment. While this offered me some relief, I am unable alone, to help Maya progress to the next step.

This is the most disturbing aspect about CVI and the current state of research. Without established evaluation processes and intervention protocols, progress for Maya and other individual’s with CVI is left up to chance and parental intuition and advocacy. These children could (and are) easily get stuck in their progress, unable to improve their ability to learn and engage with their environment and perhaps will be misdiagnosed with another condition.

Thinking about Dr. Roman’s work has led me to identify similarities between the success she has had improving children’s functional vision with what we have learned about helping Maya progress in other areas of learning. Whether emotional, cognitive, or physical learning, Maya’s greatest gains have come through helping her brain organize and relate to information in meaningful ways. It sounds like a simple and common principle, but I see it ignored or bypassed by professionals, therapists and educators every day.

To improve visual processing, the automated steps a child without CVI naturally acquires and builds upon over time, must be broken down into increasingly smaller pieces and taught to the child with CVI. This allows the brain to begin to build new connections and accept increasingly complex visual processing tasks (sounds a lot like the principles of brain plasticity Anat Baniel and her predecessor Moshe Feldenkrais stumbled upon).

Through the CVI Range Dr. Roman has created a reliable evaluation measure that offers detailed information about an individual’s visual processing rather than periodically capturing their scattered symptoms. The Range is intended to illustrate in detail how the visual processing skills of a child with CVI may vary from his/her same aged peers who have normal visual processing capabilities.

Dr. Roman firmly believes that CVI can be improved. Despite a disturbing lack of information and support for this field of study, she has research to support her claims. In the following study, published with her husband, neonatologist Dr. Lantzy, “Outcomes and Opportunities: A Study of Children with Cortical Visual Impairment”, the data suggests,

1. Functional vision in individuals with CVI can be measured.

2. Improvements in functional vision are not simply associated with a child getting older, but improved through using the CVI Range Assessment and corresponding interventions.

3. A child’s particular neurological history did not dictate their ability to move up the CVI Range/ improve their visual processing.

Unfortunately this is only the beginning of the research that is needed to expand the field of CVI and generate support for early intervention services. Despite the dire need for additional research, Dr. Roman is unaware of any other CVI assessment and matching intervention program. A lack of support from other professionals has hampered the betterment of the field. Dr. Roman was forthcoming in sharing with me some of the resistance she has been met with by her peers and some medical professionals in discussing CVI and in looking for collaborators to improve screening and outcomes.

“What’s their beef?” I asked her.

She said some professionals have complained that CVI requires too much time and effort. Others don’t believe there is anything that can be done about CVI because its origin is an unchangeable brain injury (a common theme directed toward people with cerebral palsy). There also seems to be some longstanding squabble over who should be responsible for supporting kids with CVI: vision specialists or neurology specialists. And finally, but very importantly, there is no reimbursement for treating CVI. This financial reality means that many professionals may not be motivated to pay attention to new information about diagnosing and improving CVI if they can’t be reimbursed for it.

This doesn’t mean there aren’t professionals trying to identify and treat CVI. There are several traditional diagnostic measures in use for CVI including MRIs, Teller Acuity Cards, and Visual Evoked Potential screenings. In discussing these with Dr. Roman she shared that she developed the CVI Range Assessment because she never felt these existing evaluation protocols were accurate, reliable, or provided comprehensive information about the individual’s functional vision. Moreover, according to Dr. Roman, it is imperative that in order for interventions to be meaningful and effective for individuals with CVI they must correlate with the individual’s current level of visual processing skills. Many treatment strategies are one size fits all, do not identify or adjust to each individual’s specific needs, and do not track their progress in those areas. In her trainings Dr. Roman often says, “You need more than pom poms and a light box to treat CVI.”

Dr. Roman also explained several instances to me where she believes evaluations and treatments in use for CVI are ineffectively borrowed from ocular impairment strategies. Ultimately this bothers her because the treatments or interventions for an eye condition are not the same as those for a visual processing impairment. Understanding the differences between ocular and visual processing issues and how to treat them, is imperative to supporting an individual’s visual health, quality of life, and ability to learn.

The CVI range developed by Dr. Roman has been validated by other research studies. Dr. Sandy Newcomb from the University of Maryland has studied and published the reliability and validity of the CVI Range in the Journal of Visual Impairment and Blindness. Her research outcomes validated that the CVI Range is a reliable tool for measuring the degree of CVI in an individual.

Despite the ongoing confusion and controversy about CVI, Dr. Roman remains passionate and committed to learning and sharing as much as she can about the condition. The goal of her CVI Range Assessment is to integrate a set of interventions into the child’s education program throughout the day rather than to add to the list of therapies that the family is already committed to. The information gathered through the CVI Range is designed to transfer easily to the Individualized Education Plan, where it can be implemented free of charge to the family.

It seems support for Dr. Roman’s work is spreading among therapy professionals and parents. She shared with me that four leading medical institutions (I am not at liberty to name them) are currently working to set up testing of her CVI infant screening protocol. This is exciting news to Dr. Roman, who is eager to help children with CVI be indentified as early as possible in order to help them access treatment.

As mentioned in the first part of this post, the Academy of Pediatrics articulates guidelines for vision screening and monitoring, but there is no protocol to evaluate and track the problems and progress for people who may have CVI. Dr. Roman keeps her courses open to anyone who has a sincere interest in learning about CVI because she believes “Kids with CVI can’t wait”.

Dr. Roman’s work is another confirmation for me that new learning and neurological connections for children with CP/brain injuries is possible. Perhaps with more pioneers like Dr. Roman and more research, scientists will continue to identify key pieces involved with harnessing brain plasticity. My hope is that one day we will overturn the notion that children with brain injuries have limited hope for improvement, and that early intervention and habilitation for vision, cognition, motor skills, and more, will be increasingly successful and commonplace.

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How do I get help for my child?

Dr. Roman is very dedicated and focused on doing whatever she can to help support individuals with CVI. She has an extraordinary blend of humility and passion about her work. In some ways I told her she may have too much humility given the modesty of her website which excludes information about her speaking engagements and what types of training she can offer. But promoting herself and her work are not her focus. She waits for parents, educators and therapists to call upon her and tell her what they need. With that said, I asked Dr. Roman to share with me which states have put together organized trainings on the CVI Range. You will find these listed below. Dr. Roman is currently working on her second book which will clarify the information presented in the first, and focus on supporting people with CVI who are in Phase III. To find resources in your area you may wish to join the following facebook pages:

“Thinking Outside the Light Box”

“CVI Phase III”

“Little Bear Sees”

“Cortical Visual Impairment Awareness”-closed group

You also may find information from your local parent to parent organization. If you get stuck please feel welcome to contact Dr. Roman directly by phone. You will find this information on her website: http://cviresources.com/page1/page1.html

More Resources (not included in Part 1):

Dr. Roman is available upon request to provide training and educational information about CVI. http://cviresources.com/index.html

The following states have participated in professional training by Dr. Roman. Some have initiated mentoring programs for training people in the use of the CVI Range. The contact will vary depending on who provided the funding for the training program/s. If you state is not listed you still may be able to connect with someone local who has attended one of Dr. Roman’s training programs. You may wish to ask your local parent to parent organization about potential local resources.

The Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) place that maintains a state by state directory and may be able to connect you with a local professional trained in the CVI Range.

ConnecticutNew England Deaf Blind Coalition

DelawareDeaf-Blind Project

New HampshireNew England Deaf Blind Coalition

MaineNew England Deaf Blind Coalition

MarylandMaryland Deaf-Blind Project

MassachusettsNew England Deaf Blind Coalition

MichiganDept of Education: Low Incidence Outreach, Collette Baumanbaumanc@michigan.gov (517) 373-2887 or (888) 760-2206

PennsylvaniaWestern PA School for Blind Children

VermontDeaf-Blind Project

WashingtonWashington School for the Blind

West VirginiaDept of Eduation

Dr. Roman has also conducted trainings internationally. Please contact her office for more details about opportunities for her to come to your local area to provide CVI training.

 

Young child with CP sits on the floor with a puppy licking their face, with a toy tea set in front of them.

“I betcha think I don’t have CP anymore.”

Young girl, on the floor with a puppy licking her face, with a toy tea set in front of them.Did that get your attention? It got mine this morning. Maya said this to one of our dogs as she used her new gait trainer to walk to the kitchen for breakfast. It was her first time doing this! I typically give her the option to choose her mode of transportation; crawling, wheeling in her chair, standing while wheeling, or walking. Today was the first time she had chosen to walk there. I think her success and joy in taking her 100 steps for CP this past week inspired her to choose walking today.

I am being very careful not to push Maya too hard about walking. Walking requires much energy and effort on her part. If she isn’t successful, or if she doesn’t find some joy and personal gain from walking, she probably won’t continue if given the choice. That’s human nature. Although it is important for our children to follow our guidance, “for their own good”, because of safety or until something becomes easier and they realize later the importance and value of what we are forcing them to do, this is one area where we have decided pushing Maya may not be a good idea in the long run.

I know that despite her determination and resilience, Maya definitely has identifiable limits. I can tell when she has emotionally crossed a line and becomes discouraged and tired inside, while obeying our wishes on the outside. For several years now I have been carefully observing the line between her feeling inspired versus discouraged and tired. Adversity is certainly a part of being human, but I cannot deny the constant struggle Maya has to navigate her world throughout the day. It makes me keenly aware of how much pressure is placed upon her.

From the time Maya was about a year old I have heard from therapists and from adults with CP, that although parents may have a laser focus on getting their children to walk, the individual with CP may not have the same aspirations. Later on when the person is old enough to make his/her own decision, he or she may choose to use a wheelchair because walking is too hard. With this in mind, I am working on keeping options open for Maya and encouraging her to move, exercise, and enjoy herself as she develops a relationship with her body. For now I really like the benefits I am seeing from Maya learning to walk, but I am going to be ok, and I know she will be too, if she isn’t a “walker”.

So what exactly did Maya mean when she said, “I betcha think I don’t have CP anymore.”? As she explained to our Jack Russell Terrier, Millie, she still has CP but the gait trainer is helping her to take steps and move in a new way. It was thrilling for me to witness Maya experiencing new possibilities in her body, and feeling excited about them. I had just as much joy and pride about Maya’s perspective and what she felt on the inside today, as seeing her take her 100 steps this week.

 

Cortical Visual Impairment (CVI) & Cerebral Palsy: Underdiagnosed & Undertreated



This is part one of a two-part post I will be writing about CVI:

Cortical visual impairment (CVI) is a neurological condition that is the leading cause of visual impairment of children in the US and the First World and is commonly seen in people with cerebral palsy (1. Good, Jan, Burden, Skoczenski, & Candy, 2001, p. 56.). It is not an eye condition. Resulting from damaged or malformed visual pathways and/or visual processing centers of the brain, CVI presents very differently than other types of visual impairment. Whereas a typical visual impairment can be diagnosed with an eye exam and vision testing, CVI often presents with a normal eye exam that does not explain the individual’s significant lack of visual function. Because of this discrepancy, CVI has been difficult to diagnose and treat. As I have learned more about CVI, I have begun to grasp how important it is for parents of children with CP or TBI (traumatic brain injury) to be aware of it’s signs and symptoms and how this recognition can make a dramatic difference in a child’s learning and future.

At the 2013 AACPDM annual professional’s meeting, Jen, a fellow parent and friend, who also has a child with CP and CVI, encouraged me to attend a presentation by Dr. Christine Roman, a leading expert on CVI. Hidden in this small conference room in a hotel in Wisconsin, I uncovered critical information that I felt I needed to spread to the CP community.

The lecture was inspiring and heartbreaking. Tears rolled down our cheeks as Jen and I watched videos of several children, previously diagnosed as blind who were given a corrected diagnosis of CVI, and learned to improve their vision. For years they had been deprived of opportunities to interact with and learn about their world because they were misdiagnosed and no one knew how to work with them. The key was to provide the right setting for each individual child to process visual stimuli. Then it became clear that not only were these children not blind, but that a new world could be opened up to them.

I wanted to shout from the rooftops and tell parents, educators, and doctors, “Hey, you, over here!!” “This researcher is onto something and it’s not just another diagnosis!” “She has found a way to improve the vision of people who have CVI.”

I left the lecture and couldn’t stop thinking about whether CVI could explain Maya’s mysterious visual processing problems. When she was three, Maya’s OT kept telling me, “Something isn’t right with her vision but I don’t know what it is.” Her eye exams didn’t offer insight into these problems. Maybe now I had an explanation. Over 40% of the brain is devoted to visual function! Knowing this information, if a child like Maya has damage to her brain, there is a chance that her visual processing centers may have been damaged as well.

During her lecture Dr. Roman discussed how children with CVI are also often misdiagnosed as having other conditions. Some are diagnosed with autism because their behaviors are similar to children on the spectrum (it is also possible for children on the spectrum to have CVI). Children with CVI also may be mistaken for being less intelligent or less capable of learning because of the challenges they have processing visual stimuli.

Dr. Roman said, “Some of these children who have brain injuries that are considered ‘so severe’ have been approached by others with low expectations for their learning capabilities. But it’s interesting to see what happens when these children have visual access to their world. Some of these children may not have demonstrated a desire to move because they are not able to see the world in a meaningful way.” After evaluating thousands of children, Dr. Roman reports that a child’s ability to improve functional vision on the CVI range does not appear to be influenced by the type of brain injury.

The major causes of CVI:

Although CVI can be a stand-alone condition some people with CVI have additional disabilities including:

  • Epilepsy
  • Cerebral palsy **One former President of the AACPDM told me he believes more than half of the CP community has CVI and most of them don’t know it!
  • Moderate cognitive impairment or lower
  • Sensorineural hearing loss

(Adapted from Khetpal & Donahue, 2007; Matsuba & Jan, 2006)

Why haven’t I heard about CVI and how pervasive it is in the CP community?

Dr. Roman said that CVI didn’t enter the medical literature until about 20 years ago. Many pediatricians and other doctors are still unaware of the condition and it is likely significantly underdiagnosed. Despite the Academy of Pediatrics articulating guidelines for vision screening and monitoring, there is no protocol for CVI evaluation and monitoring. Without formal recognition and consensus on diagnosis and intervention, time spent on treatment would not be covered by insurance.

At this time Dr. Roman says it’s mostly parents and educators who approach her team because they want more answers about their child’s vision that they haven’t been able to get. Dr. Roman hopes that CVI begins to gain more widespread and formal attention from the medical community in order to support assessment and early intervention.

The redeeming news for me was that regardless of professional disagreements, Dr. Roman has developed what appears to be a reliable system of evaluation and monitoring for CVI which she readily shares (it’s in her book as well) and which can be incorporated into educational and home settings.

What is Dr. Roman’s interest in CVI and what has she done in the field?

Dr. Roman began her career working as a teacher of children with visual impairment for 17 years. She was frustrated that many of these children were overlooked and she felt dissatisfied with her ability to help them. She went back to school to learn whatever she could about “this mysterious form of visual dysfunction,” (which she later learned was CVI) and how she could better support these children.

She is currently the Co-Director of Pediatric View in Pittsburgh, Pennsylvania and serves as Project Leader of the CVI Project at the American Printing House for the Blind in Louisville, KY.  Dr. Roman also is a Project Consultant/Trainer to two 5-year multi-state CVI-mentor training projects working to teach professionals to evaluate for CVI and to employ the CVI educational principles she has developed.

Dr. Roman’s contributions to CVI are built upon the foundation developed by pediatric neurologist, Dr. James Jan. She furthered his ideas by establishing the CVI Range, a 10-point scale assessment for determining whether someone has CVI and evaluating their level of function, as well as principles for guiding improvement. Although medicine and special education have not identified a body of best practices for assessment and intervention for children and adults with CVI, Dr. Roman is deeply passionate about continuing to share her knowledge of CVI and what techniques she has discovered to best support identifying, understanding, and improving the vision and education of people with CVI.

Dr. Roman’s 3 components for confirming the presence CVI: 

1. Eye exam doesn’t match up with how child uses vision

2. Big neurological event-common to all children with CVI

3. Presence of 10 characteristic behaviors (assess and evaluate)

There are other evaluative techniques used but Dr. Roman has found that these components to offer the most reliable and comprehensive assessment.

The 10 behaviors evaluated by using the CVI Range Assessment Protocol:

  1. Attraction to color (this is often pointed to as a sign of autism but kids with autism don’t NEED color to see but kids with CVI do)
  2. Light gazing and/or non purposeful gaze–people with CVI often need more light to see or will gaze non-purposefully because they can’t make sense of what they see
  3. Require movement to see
  4. Difficulty with visual complexity and sorting visual information–things are confusing to look at especially when there are lots of visual patterns, or competing sensory information
  5. Visual latency–visual responses are slow or delayed
  6. Visual field preference–children with CVI see better looking at objects in certain directions (such as left or right periphery), often difficulty recognizing information in lower field
  7. Difficulty with distance viewing–this is related to the preference for visual simplicity. Objects far away may become lost among other objects or scenery.
  8. Visual reflex differences–often don’t blink when touching their nose, not blinking when threat coming at them
  9. Difficulty with visual novelty–child looks at familiar thing instead of what is new in the visual field. Because the whole world often looks new to children with CVI they tend to focus on what they can recognize rather than what is novel.
  10. Lack of visual-motor match–look and touch occur as separate functions, e.g., child looks, turns head away from item, then reaches for it

The CVI Range assessment is NOT a replacement for an eye exam, but helps to describe how the child sees. It compares visual functions across a diverse population of children 6-21 years old and provides a common language for describing levels of function. The Range is a change model and is supposed to be used to develop appropriate interventions leading to improvement. Dr. Roman’s approach is to develop more vision in the brainso the individual continues to make progress in the range and in turn his/her functional vision.The educator/professional uses the range to monitor changes in visual processing, and adapt the individual’s environment to correspond with those visual processing improvements.

Dr. Roman has a goal of getting all children to 7 on the range and, although most people with CVI naturally improve over time, Dr. Roman says progress is dependent on what can be done to foster improvement, as well as to offer support as early as possible.

Five Big Ideas for Working with Children with CVI:

(Adapted from Roman-Lantzy, 2007)

  1. Understand and be sensitive to the child’s visual world.
  2. Develop familiar routines and activities.
  3.  Offer visual stimuli at (but not above) the child’s level.
  4. Approach the child gently, with respect and humor.
  5. There is no universal CVI program- Each child is unique.
Stay tuned for Part 2 on CVI and Cerebral Palsy where I will detail more personal insights and ideas about CVI and visual processing.
Sources:

1. Good, W. V., Jan, J. E., Burden, S. K., Skoczenski, A., & Candy, R. (2001). Recent advances in cortical visual impairment. Developmental Medicine and Child Neurology, 43: 56-60.

CVI Internet Resources:

Locate a CVI expert or an individual who has been trained in administering the CVI range

Pediatric Cortical Visual Impairment Society

American Printing House for the Blind

American Foundation for the Blind

Dr. Roman discussing CVI on video 

Cortical Visual Impairment 101– blog post from the website “A Day in our Shoes” an IEP resource website for families with special needs children

Dr. Karen Pape discuss CVI in one of her blog posts, “Myths and Truths about Cortical Blindness: Baby Brains DO Recover”

Video-Strategies for Improving Literacy Skills in Students with CVI-Perkins Tutorial

Books on CVI:

Dr. Roman’s Book–Cortical Visual Impairment: An Approach to Assessment and Intervention (The educator/professinal CVI Range assessment is in the book)

Support Resources:

Thinking Outside the Light-Box-Vision Therapy Support Group is a CVI fb support group for parents

Little Bear Sees a website offering wonderful information for parents about children with visual impairment. They also have about CVI available through their website.

More on Dr. Roman’s credentials:

Dr. Roman was previously the Director and Assistant Professor in the Program in Visual Impairment at Marshall University Graduate College, South Charleston, West Virginia; Research Assistant Professor at the University of Pittsburgh Special Education-Vision Studies Program; and Infant Developmentalist in the Neonatal Intensive Care Unit of Western Pennsylvania Hospital and the Children’s Home of Pittsburgh. She also directed Project CRIB at the Western Pennsylvania School for Blind Children. She has contributed journal articles and book chapters on orientation and mobility, children with multiple disabilities, and visual assessment for infants and has presented lectures and workshops on cortical visual impairment all over the United States and around the world.

 

 

Q&A with Dr. Marshalyn Yeargin-Allsopp Medical Epidemiologist & Chief of the Developmental Disabilities Branch National Center on Birth Defects & Developmental Disabilities CDC

Dr. Marshalyn Yeargin-Allsopp
Medical Epidemiologist and Chief of the Developmental Disabilities Branch
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention (CDC) USA

1. CP Daily Living: How can CDC help the CP community?

Dr. Marshalynn  Yeargin-Allsopp: CDC is committed to continuing to provide essential data on cerebral palsy (CP). Communities can use CDC’s CP tracking data on the number and characteristics of children with CP, including information on CP subtype, walking ability, and co-occurring conditions. This information may be helpful in in planning for services, guiding policy, and promoting full participation in community and family life.

We also co-host events to raise awareness of CP and engage local communities that collaborate with CDC on CP tracking. These events are free of charge and open to the public. This year, we will be partnering with University of Wisconsin-Madison to host an event on March 1, 2014. For more information about this event, please contact Julia Richardson at jrichardson1@cdc.gov.

2. CP Daily Living: Where do you get funding for your CP work?

Dr. Marshalynn  Yeargin-Allsopp: The Children’s Health Act of 2000 authorized the creation of the Autism and Developmental Disabilities Monitoring (ADDM) Network. The ADDM Network is a group of programs funded by CDC to estimate the number of children with autism spectrum disorder and other developmental disabilities. By using the infrastructure already in place for tracking autism spectrum disorder, and without additional funding, CDC has been able to track the number and characteristics of children with CP.

3. CP Daily Living: What type of studies do you conduct? What other types of studies or programming could you do to further our knowledge of CP?

Dr. Marshalynn Yeargin-Allsopp: CDC’s work in CP focuses primarily on tracking. For example, we know that about 1 in 323 children has CP based on tracking in multiple U.S. communities. Tracking has helped us learn more about causes and the risks for CP in hopes of finding ways to prevent CP. For example, we reported that approximately 10 -15% of CP is due to events that occurred after the newborn period, such as head injuries, meningitis, or stroke from sickle cell disease. Some of these events are preventable with public health interventions such as child passenger safety measures and vaccinations (shots).

CDC is well-positioned to build upon the existing ADDM Network to expand the scope of its current activities and answer more questions about CP. A comprehensive strategic plan for CDC’s CP activities might include:

  • Tracking younger children with CP in order to better understand when and what interventions are being used.
  • Learning more about the risks of CP and ways to prevent it by conducting research among children with CP, such as special studies of children with CP identified by the ADDM Network.
  • Studying issues across the lifespan, such as employment, by following up on adults with CP who were identified in childhood by the ADDM Network.

4. CP Daily Living: Why it is important to track how many people have CP? Are there any other agencies tracking this information?

Dr. Marshalynn Yeargin-Allsopp: It is important to know how many children have CP so that appropriate plans can be made to support children with CP and their families. Understanding the number and characteristics of children with CP is key to promoting awareness of the conditions, helping communities coordinate service delivery, and identifying important clues for further research.

CDC’s ADDM Network provides the most complete picture of the number and characteristics of children with CP in the United States. The ADDM Network is unique in that its methods are population-based, which means that we look at information on thousands of children from diverse communities across the country. In 2008, the ADDM Network sites that tracked CP represented approximately 4% of 8-year-olds in the United States. Because of the size of our population of children with CP, we are able to look at more than just the number of children with CP. We are also able to examine characteristics of children with CP and compare groups (such as boys and girls or White children and Black children).

5. CP Daily Living: I have heard people state that none of the issues which cause CP can be prevented, and the ones that can are already being studied by other fields (such as stroke and prematurity). What do you think about these statements?

Dr. Marshalynn Yeargin-Allsopp: In most cases, we don’t know why children develop CP. Some preventable risks for CP have been identified. For example, babies with severe jaundice can develop kernicterus, which is a condition that occurs when severe jaundice goes untreated for too long is a known cause of CP.  However, severe jaundice can be treated with special lights (phototherapy) and perhaps blood exchanges to stop the development of kernicterus. Similarly, routine vaccination of babies prevents many cases of meningitis, another known cause of brain damage that can, in turn, cause CP. Making sure that children are properly buckled in car seats or booster seats can help prevent head injury during a car accident; head injury is another cause of CP.  CDC’s ongoing CP monitoring efforts provide the opportunity to examine trends over time in the number and characteristics of children with CP for whom the cause of their CP occurred after the first month of life and may have been prevented.  This enables us to identify areas for additional prevention efforts as well as to evaluate whether current prevention efforts may  be contributing to decreases the number of children with CP overall.

6. CP Daily Living: Are there ways for the CP community to collaborate and extend or join studies in order to determine what links may exist between what other fields are studying and their condition to the development of CP such as prematurity?

Dr. Marshalynn Yeargin-Allsopp: There are many opportunities for collaboration between those studying CP and those studying other conditions. For example, in CDC’s most recent report, we found that many of the children with CP had co-occurring epilepsy and autism spectrum disorder. Of particular note, we found that about 7% of children identified with CP also had autism spectrum disorder. This means that autism spectrum disorder order is more common among children with CP than among their peers without CP. Information about the co-occurrence of CP and other conditions, such as autism spectrum disorder, can help direct research into shared risks and causes.

7. CP Daily Living: How does the CDC partner with private agencies and researchers to accomplish their goals and mission?

Dr. Marshalynn Yeargin-Allsopp: Partnerships are essential to CDC’s work in CP. At the local level, we partner with local organizations in each of the four U.S. communities where CDC tracks CP. Without the ongoing support of these organizations, which range from public schools to pediatric specialty clinics, we would not be able to collect this important information on the number and characteristics of children with CP. At the state and national level, we also partner with organizations that provide services to and advocate on behalf of children, families, and adults living with CP. These partners help us connect with families and help us remember that tracking is about more than just the numbers—it’s about individual children and families that need support. Our national partners also help move our data to action and use it to support their own efforts.

8. CP Daily Living: One of our followers commented that she didn’t understand why CDC would focus at all on the CP community since it isn’t a disease. Can you comment on this?

Dr. Marshalynn Yeargin-Allsopp: The mission of the CDC’s National Center on Birth Defects and Developmental Disabilities is to promote the health of babies, children, and adults and enhance the potential for full, productive living. Whether one considers CP a “condition” or “disease”, our ultimate goal to help parents, doctors, educators, and other key stakeholders understand more about CP so that improvements can be made to help children and families affected by CP.

 Additional resources:
Learn more about CDC’s most recent findings on CP

Read the 2013 ADDM Network Community Report on CP

Listen to a podcast in which Dr. Marshalyn Yeargin-Allsopp describes the causes, preventions, types, and sign and symptoms of CP

Download a free checklist to help track your child’s developmental milestones

Meeting the practical and emotional challenges of Maya’s growth

Over the past few weeks supporting Maya has brought us some new physical challenges and unfamiliar types of back pain. Usually changes like this signal the need to adjust our daily routine and our approach to lifting and supporting Maya. Sometimes it even means we need different supportive equipment for her to better access her environment and to support her learning. We’ve been through several cycles like this over the last few years where we must evaluate Maya’s growth and development in multiple areas and how we may best support her. And now, after going through these evaluation processes more than a few times, I have seen a pattern emerge in the way I process these realizations.

During a typical day, I make a point of trying to keep my main focus on Maya’s strengths and the things she is able to do, while in the background of my mind, I think about the things she has trouble with and how to gently open up the next developmental steps for her. This approach helps to keep me focused and mostly in a place of acceptance rather than grief. But when I start thinking through better strategies for lifting, transferring, and ensuring Maya is doing whatever she can to help us to help her, I often find myself stepping into uncomfortable emotional territory.

Maya’s growth spurts and the resultant changes in my and my husband’s body (like back pain) demand practical analysis and detailed decision making, and often catapult me out of my status quo emotional space. While immersing my thoughts in whether we need different equipment supports and evaluating Maya’s capabilities, painful feelings quickly rise to the surface of my mind. I find myself looking in great detail at what she is not able to do and focusing on what I hoped she might be doing at this point in time. I then have trouble keeping my focus on acceptance, and end up in a place of anxiety and grief. Maya’s birthdays often have a similar affect on me because these are marked moments of time where I step off of the train and pause to look backwards and forwards to see where she is in her development.

The upside to going through this cycle multiple times is that I have learned how to get back on track and work through these difficult feelings. It has not been easy. As Maya continues to grow, we learn more about how her early brain injury affects her body. Each year or growth spurt brings new realizations. As I have written many times before, it’s very difficult for the parents of a child who has CP to come to a place of acceptance because we continue to have to learn about what it is we are accepting.

Many of you may be wondering how I get back into my most comfortable emotional space once I have crossed into a place of grieving. I don’t know that I have a concrete answer for that. The best information I can offer is that I don’t allow my grief to spiral down into a cycle of  “can’t do’s” and I try not to add additional thoughts to the surfacing difficult emotions. For instance, if I am upset because Maya has difficulty sitting up, I am not going to actively think about something else upsetting such as wishing that she could drink out of a cup without a straw. I also know now that if I get stuck thinking about what Maya can’t do, it negatively impacts her in ways I would never intend. By keeping my thoughts focused on the present and moving her forward at her own pace, I naturally see much more of what IS working for her. The seemingly small things get celebrated. If I were constantly thinking about what she wasn’t doing, I would probably miss many of those victories that she gets excited about and has worked so hard for.

While we have developmental timelines for “typically” developing children, we don’t have them for children with CP. They are not as well studied, documented, or shared. As parents of children with special needs, our children have their own growth timeline and emotions uniquely associated with their challenges. These developmental uncertainties present themselves at unexpected times and impact family dynamics and a parent’s emotions in confusing ways. At least they do for us.

Although as parents we often face what feels like a disorganized and unexpected developmental path in raising a child with CP, I am discovering that we can identify patterns or rhythms within our own situations. These emerging rhythms are helping me figure out when to strategically plan and how to make sense of my own feelings and reactions, so that every next step does not feel like new territory.  As we work through this next phase of identifying what changes in our environment may be needed to support Maya and our family, I find some comfort in realizing I have been in this emotional space before and have made the needed adjustments. I feel like I picked up another piece of our puzzle and I am cultivating the acceptance to go along with it. And you know what, as Maya continues to grow physically, emotionally, and cognitively, we will continue to move through these transitions. And it’s not always about grief. Sometimes it’s about celebrating our children’s victories and talents, and ensuring that they have the support they need at home and in society, to make sure that those strengths can come forward and can be shared with the world.

P.S-

So this latest cycle led us to see that we needed a better way to get Maya in and out of bed. Thanks to a friend who has a young son with CP, we got the idea of purchasing an adjustable bed for her. It’s been so helpful especially for the middle of the night bathroom trips! And she loves helping to sit herself up using the remote. Sometimes a little too much! 🙂

 

 

Cultivating a Balanced Therapeutic Program for Children with Cerebral Palsy and More

*This post is a more comprehensive version of the speech I gave at the 2013 AACPDM Family Forum.

Maya was diagnosed with cerebral palsy 5 years ago and since then it has been a challenge to create an effective therapeutic program that is also in balance with the overall needs of our family. The focus of this post is how the diagnosis of cerebral palsy and having an uncertain future for your child can create extraordinary emotional strain and confusion for families in deciding how much therapy, treatment and practice to include in their child’s daily life. I will share how I went from taking regular cross country therapy trips that pushed the physical, emotional, and financial resources of our family, to embracing a healthier pace and way of life for all of us.

With many conditions, a diagnosis offers an outline of what to expect for the future. When the developmental path or outcomes are clear, parents may begin to set down emotional roots to help us accept and cope with our child’s situation. The diagnosis of cerebral palsy, however, is different. Although receiving the diagnosis often allows us to access services, health benefits, and provides us with a name for our child’s symptoms, it doesn’t offer a road map for the immediate or distant future. As humans we often have a fundamental desire for answers. Answers offer a sense of security and control. With cerebral palsy we have to continuously wait and observe our children over time, and for years, to understand more about how their unique development will unfold. And even as the issues associated with each child’s development become clearer, we still don’t know which issues ultimately will be resolved with time and treatment, and which issues will remain.

Despite these unknowns, many doctors still make predictions regarding a child’s future. Although it may seem reassuring to have professional insight to help us emotionally and practically plan for the future, predictions can actually cause more emotional stress because they are often inaccurate. No one knows for sure what individual outcomes may be. I have heard countless stories from parents and adults with CP about how many doctors were wrong about their future. In our case, our first developmental pediatrician was terribly incorrect in her prediction of how cerebral palsy would affect Maya, thinking it would be much less of a problem in her early life than it has been. The disparity between this doctor’s prediction and reality often made me wonder if we did something wrong or if we didn’t do enough. Although I don’t think that now, it has plagued me in the past and was difficult to leave these thoughts behind. Take my advice and avoid predictions and becoming emotionally entangled in them. This requires tremendous discipline, and finding acceptance in not knowing what the future may look like, and how your efforts may or may not affect it.

When Maya was three years old we began seeing Dr. Hoon, a developmental pediatrician at Kennedy Krieger Institute in Baltimore, Maryland. During our initial visit he asked us what kinds of therapy we were doing with Maya. We had been told of the importance of early intervention, and it is certainly one thing all professionals seem to agree upon (despite not knowing how much and what kind of therapy is most effective for CP). I proudly ran off a list of activities and therapies we had packed into our routine. He then showed us a graph demonstrating that researchers do not know how much therapy is beneficial for people with CP, and still question whether there is a point of diminishing returns (where more therapy has no further effect).

We saw this chart every time we visited, and he would smile and gently say, “Have you seen this before?”. Doctor Hoon was trying to convey the message to slow down. He cautioned us about overfilling our daughter’s therapeutic program and pushing ourselves too hard. He said to us, “There is no magic bullet for alleviating the symptoms and challenges associated with cerebral palsy. If there was one we all would be in line for it.” I heard him but I didn’t. Like so many parents before me I thought that maybe there was a little known intervention out there that most people didn’t know about and would be able to help my daughter further. At the very least I had to see what was out in the world for myself.

The lack of certainty about Maya’s future and, not knowing what combination of therapies would be most effective, made room in my mind for possibilities. I thought that I would rather try and have the potential of a better outcome than not try at all and feel guilty later. I wanted to give my daughter a chance at a more comfortable and typical experience of life. I would realize later that this is territory where parents must be careful. It’s easy to become like Smeagol from Lord of the Rings, who obsesses over the potential power of the ring to the point where it took over his life physically, emotionally, and mentally. You don’t want your quest to help your child to consume you and your family’s precious time and energy so that there is no room for anything else, and other areas of your life and your child’s life suffer.

Smeagol transforms into the creature called Gollum in Lord of the Rings

After our first visit with Dr. Hoon we continued our personalized therapy program for Maya, trying a variety of activities based on other parents’ input, news programs and hunches. It was also around the age of 3 that Maya’s developmental picture became clearer. This was helpful because at least we knew more confidently what challenges we had to try and help her deal with and address. But even with this improved clarity, it turns out that there isn’t much available to make a large and measurable difference for our children. We saw this first hand and yet didn’t know there was also research to support it. During a recent talk about stem cells, Dr. Novak from CP Alliance in Australia, mentioned that researchers have found in some studies that current conventional CP therapies offer only a 4-10% average gain for any particular individual. With outcomes like these no wonder parents feel lost and compelled to hunt for something off the map to help their children. Many of us enter into the role of amateur scientist and avid fundraiser, trying out new possibilities in hopes of helping our children make progress. And this cycle happens repeatedly with many families.

By the time Maya was 4 we had been taking 6 trips/year spaced between NYC and northern California for weeks at a time, spending thousands of dollars on an uncovered treatment in addition to our regular schedule of local therapies. Despite the stress of traveling and related expenses, we felt the effort was well worth it. She was making more progress than she was before with conventional therapy, and she mostly enjoyed these sessions. And truthfully part of ME felt relieved because I was channeling my worries into trying to help my daughter.

But ultimately I came to see the value of Dr. Hoon’s words. I became mindful of how much energy and time we were spending on finding the “perfect” developmental program for our child while life was passing us by. How long were we going to follow this intensive program I created for Maya? How much progress was worth these sacrifices and would we have seen some of theses developments over time without this therapy? No one knows the answers to these questions and that is the tough part about trying to make decisions about what to do and how much. We saw some wonderful benefits from this extra therapy but it didn’t come close to resolving all of Maya’s challenges, and pursuing it so aggressively created new problems as well.

Maya started having seizures that were triggered by all the travel, I was away from my husband for long periods of time, and we were always tired. The turning point for me was when, shortly after one of our trips, Maya had a very long seizure. As I sat in the ambulance and prayed for her life, a different vision for relating to her diagnosis and challenges emerged. I became more focused on enjoying my time with Maya and my husband, rather than focusing on trying to fix her cerebral palsy. We had the best intentions and thought that by working aggressively to help her so early on in life, we were helping her to miss less later on in life. Now I am mindful of the present and how making the present less stressful will our help our family in the long run.

For those of you who are feeling out of balance and are focusing the majority of your energy and your family’s energy into trying to help your child with cerebral palsy, I have prepared a list of insights and advice to help you come back into balance. This journey isn’t easy, and it’s different for everyone, however, we all face common fears and perhaps guilt around trying to do whatever we can to help our children. Be easy with yourself, and if you feel you have been pushing too hard, know that it’s ok. As parents we do the best we can with what we know, understand, and realize at any given time.

CPDL’s Guidance for Cultivating a Balanced Therapeutic Program:

1. Assess and pay attention to how much intellectual and personal energy you are giving to trying to find answers for your child. Be sure to carve out times during the day to simply be with your child, other family members, or spouse without thinking about CP, how your child is moving, speaking, walking, etc.

2. Don’t forgo reason and good sense to help your child. If you are trying a new therapy, make a list of what sacrifices you and your family will be making including any emotional, physical, financial, safety, and unknown risks. Remember that unknown risks do not mean there aren’t any. Discuss these issues with people you trust and your child’s medical team. Set time commitment and financial limits and discuss expectations.

3. Your child will have his or her own developmental timeline. When you compare your child to other same aged peers, you may subliminally approach your child with disappointment and s/he may perceive this as something s/he is doing wrong. Focus on the positive points, what is working and the seemingly small, incremental steps that lead to putting larger developmental pieces together.

4.  Assess and honor your child’s physical and cognitive energy limits each day. These may change daily. Besides the seizures, the therapy we were traveling for was recommended twice/day for a week. Maya’s body could only handle it once/day at most. You know your child best. Don’t be afraid to speak up if you think what is best for your child is different from what the experts advise.

5. Be honest and aware of what is driving your approach to creating your child’s therapy/developmental support program. Be on the look out for when feelings of guilt, fear, and hopelessness that may be motivating you to push your child and other family members in unhealthy ways. Remember, it’s your child who has to ultimately integrate all of the information and  exercises that you plan. I think for many of us these emotional journeys are a necessary stage to go through on our way to acceptance of the CP diagnosis. As one fellow parent said to me, “For me, it (trying to fix my child) was the only way I could feel any ounce of control when the situation felt so completely out of control.” Those words resonated with how I felt at the time. I had to find some way to help my child and do whatever I could to make her path easier. Because accepting the status quo wasn’t equating with the progress I envisioned, I felt that I couldn’t stand idly by, watching and waiting.

6. Creating a balanced schedule gets easier with time as your child’s developmental picture becomes clearer. What I mean is that you will have a better understanding of what challenges you will be dealing with long-term when you and your child’s professional team will have had time to observe her.

7. Focus on what your child does well and what s/he likes. Integrate interests with opportunities for development. Maya loves riding and to her it doesn’t feel like therapy. The riding facility we go to recently referred to therapeutic riding as similar to sneaking broccoli into cookies and I couldn’t agree more!

8. There is no secret cure for CP and when there is a major breakthrough in symptoms or complete alleviation of them, it won’t be a secret. I am not discouraging you from trying to create a program that works for your child, but just be sure to give other aspects of your life and your child’s life attention as well.

I have definitely moved into a place of deeper acceptance of my daughter’s challenges and I now spend much less of my time and energy thinking about how to make her symptoms of CP go away. By focusing on her accomplishments I feel more optimistic and hopeful rather than hurried and guilty because I am not making enough happen for her. I look for smaller developmental changes while still hoping for the larger ones, but perhaps not counting on them. I celebrate her triumphs alongside her. We spend much more time laughing and having fun. It’s taken time and work to reach this point and some days are better than others.

Through CP Daily Living I hear from many families who have experienced similar emotions, confusion, and distress as our own family. There has been a historic lack of information, support, research and hope for our community. We need to bring our challenges and concerns to a larger public conversation rather than recreating the same frustrations privately in our own homes. We can be more effective and efficient searching for answers together, in collaboration with researchers and professionals. Ultimately I believe the most powerful, effective and efficient gains for individuals with CP will emerge through the larger community focusing on common problems together.

You can look for these opportunities for collaboration by following the work of our US and international CP organizations, as well as my own site CP Daily Living. For daily updates and news please follow our Facebook page or Twitter feed.

 

World CP Day & 12 Months of Cerebral Palsy Advocacy Ideas

It’s World CP Day! This is the 2nd annual international awareness and advocacy day for people with cerebral palsy. In honor of this day I have prepared a list of facts about cerebral palsy as well as twelve advocacy ideas for each month of the year that can help keep the momentum going.

Twelve things to know about cerebral palsy:

1. Cerebral palsy is a movement disorder caused by early injury to the part of the brain responsible for motor control/coordination. The signals sent from the brain to the individual’s muscles are not regulated properly, leading to a lack of control over movement. Over time the lack of muscle control can lead to secondary musculoskeletal problems.

2. 17 million people worldwide are estimated to have cerebral palsy.

3. Although everyone with cerebral palsy has problems with motor control, they experience the coordination, balance, and/or postural issues in different ways and often face very different challenges.

4. Cerebral palsy is not contagious.

5. Many people with cerebral palsy may have a secondary diagnosis or related complication/s including epilepsy, blindness, hearing loss or deafness, speech/communication issues, sleep issues, learning challenges, intellectual disability, difficulty with bowel and/or bladder control, eating and drinking issues, spinal and hip abnormalities.

6. Current treatments/interventions for CP offer only about a 4-10% gain or improvement. -source, Dr. Iona Novak, CP Alliance Aus

7. Despite being the most common childhood motor disability, cerebral palsy has no dedicated US federal funding, and our private US based CP organizations have annual donations totaling less than 2 million dollars (that is the collective total!).

8. Many people incorrectly assume that cerebral palsy is a pediatric disorder. This is completely incorrect. In fact, there are more adults with CP than children.

9. Cerebral palsy has been a known condition for centuries, yet in the majority of cases specific causation is still unclear. In addition scientists still don’t know why certain conditions lead to the development of cerebral palsy in some  children but not others. For instance, prematurity is one of the most common associations in the development of cerebral palsy but we still don’t know why some premature babies develop CP and others do not.

10. 3 out of 4 people with cerebral palsy (both children and adults) are in pain and some are not able to communicate to describe their pain. -source Dr. Iona Novak, CP Alliance

11. Although CP is considered to be a non-progressive disorder, over time symptoms can worsen.

12. People with cerebral palsy have diverse talents and interests: They are artists, comedians, members of the military, attorneys, teachers, psychologists, leading physicians, musicians, actors, models, athletes, fitness instructors, entrepreneurs, scientists, and the list goes on!

Twelve things you can do to support the CP community:

Every day is an opportunity for CP awareness! Here you will find a list of suggestions to help support people with cerebral palsy each month of the year. There are plenty more, but these can get you started and get ideas flowing:

1. Know which organizations are doing what for the CP community. For instance many people choose to give funds to United Cerebral Palsy assuming the money is somehow making its way to CP research. This isn’t the case. Although the name may lead you to believe otherwise, United Cerebral Palsy’s mission is focused on the supporting the greater disability community. Their work is important, but United Cerebral Palsy’s national mission does not focus on addressing the widespread and unmet medical and specific advocacy needs of the cerebral palsy community.

See the UCP name change petition for more details and sign it while you are there:

2. Participate in the NINDS Patient Advisory Core– This is a unique opportunity for individuals with CP and their advocates to share their voice with researchers. This is a newly forming advisory group at the Institute of NIH focused on funding brain research. They are looking for committed patients/advocates willing to interact with investigators who have expressed interest in engaging patients in the development of their research ideas and protocols but don’t necessarily know where to begin. Please contact me at cpdailyliving@gmail.com for further information about applying/signing up. International participation is welcome.

3. Propose an idea for World CP Day and/or review and vote on existing ideas: 

4. Stay connected to community-wide news on CP Daily Living’s facebook page

5. Inquire about participating in a clinical trial. You can start by looking here: www.clinicaltrials.gov. You may also ask your local research hospitals and doctors about local trials you or your child may qualify for. Having access to patients in order to complete clinical trials is a huge problem for scientists and one that we CAN help them with.

6. Reach out to equipment developers and offer ideas and feedback to them specific to your needs and perhaps the broader CP community. I have done this and most of them are deeply interested in having constructive and practical insight from equipment users and caregivers.

7. Remain educated about CP by participating in educational conferences and telecasts sponsored by our CP non-profits and research centers. Many members of our community remain disconnected from current information about cerebral palsy and ongoing cerebral palsy research. There is a calendar on the CP Daily Living homepage with international educational events.

8. Sign up for the US CP National Registry (or one in your country) You can read here what the registry is about and how it can help the CP community.

9. Create awareness about cerebral palsy by sharing your personal story locally and/or with a member of Congress. Your voice and vote matter! If you meet with a politician tell them why supporting NIH (federal funding for research) funding and cerebral palsy research is important to you. I have scripts and some guidance on the website if you are interested in meeting with your local members of Congress. Here is a handy tool for finding your local representatives so that you can stay active in sharing your voice: http://www.house.gov/representatives/find/. Here is another resource for finding your state Senators: http://www.govtrack.us/congress/members.

10. Use social media to share facts about cerebral palsy and guide people to our CP organizations.

11. Financially support one of our US CP non-profits. Although there are many things you can do which don’t require money, improving the financial support of our CP non-profits will ultimately be the key factor leading to more research and support services for our community.

Cerebral Palsy International Research Foundationthe most robust and consistent funder of CP research

Pedal with Peteraising money for research through bike rides and walks 

Let’s Cure CPnew parent founded organization focused on fundraising for regenerative medicine research

Reaching for the Stars pediatric organization that has been working on opening up federal funding sources for CP but has also helped to fund a few CP research studies.

12. Share this list with someone you know!

 

 

CP Alliance publishes research analysis of cerebral palsy interventions

I found an article published by a panel of researchers from CP Alliance and the University of Notre Dame reviewing research on interventions for children with cerebral palsy. I came across it the day after I wrote the post in response to the FDA warning about the use of HBOT treatment for the autism and cerebral palsy communities. Their goal was to present a comprehensive summary of information for clinicians and other interested parties to have a clearer understanding of what has been discovered about the effectiveness of pediatric CP treatments. This was an enormous undertaking and I am deeply grateful for this effort. Although the intended audience of their article was medical providers and professionals working with and on behalf of the CP community, I felt it was also important to circulate a layperson’s version of this critical information to the CP community.

One hundred and sixty-six articles met the criteria to be included in their analysis and several approaches were used to illustrate, evaluate and code the evidence in the studies  reviewed. One of these approaches was an “Evidence Alert Traffic Light” which assigns colors of green, yellow, or red, based on the level of supporting evidence for each intervention. Green indicated that the panel felt the literature supported “doing an intervention”, yellow evidence supported either “probably doing it” or in some cases “probably not doing it”, and red meant “do not do it” because alternatives exist or the panel determined that there was enough evidence to demonstrate an intervention is ineffective.

The panel hopes that by having this research analysis summary in one paper clinicians, managers, and policy-makers will be provided with a “helicopter” view of the best available intervention evidence that could be used in furthering understanding and decision making about what is and is not working for the CP community.

Some things to keep in mind about the information presented in the graphics illustrating their research findings:

1. There is no new information being created through this research article. The information being presented is an analysis, summary and presentation of existing published studies in the CP pediatric population.

2. Although all sub-types of CP were included in this research analysis the majority of studies focused on interventions for spasticity.

3. 70% of CP interventions within clinical care had either lower-level evidence supporting their effectiveness or inconclusive evidence which placed them in the yellow category.

4. The lack of certain efficacy evidence for large proportions of the interventions which comprise standard care for cerebral palsy is a problem for people with CP, healthcare providers, and entities funding treatment. More research using rigorous designs is urgently needed as CP is the most common physical disability of childhood with lifelong impact. What is noteworthy is that despite the need for more research and financial support, the authors do state that in the last ten years there is an international trend toward increasing numbers of studies being published about CP interventions.

5. The panel of researches noted within the article that it is critical to begin to properly evaluate outcome measures when prescribing assistive technology and devices for children with CP since devices form a large part of standard care. They state that this type of research probably hasn’t been conducted very often due to cost and because benefits are often easily observed. However, because of device abandonment issues in the CP community and the associated costs, they believe efficacy research is important for helping individuals and the larger CP community make decisions about equipment.

6. There was at least one intervention in the “red” category that we use with Maya because it has a large body of research that demonstrates it is not an effective treatment. We have known for some time that there was no evidence for its efficacy yet we have continued to use it. Perhaps some of you will see an intervention in the “red” category you have tried or currently use for yourself or your child who has CP. In order to determine how an intervention was evaluated one would have to look at the individual studies that were reviewed.

Research is a moving body of knowledge. It is often our best collective and objective determination of what is or is not happening at a particular point in time and with a specific group of people. This article focuses on the importance of clinicians knowing and discussing with patients and families what the research literature demonstrates, as well as discussing the goals and desires of the family. In our case we are clear and feel informed about what the literature states about this intervention. We have weighed this information against our personal experience and the minimal cost associated with Maya having access to it. Sometimes the benefits a family or person identifies are not captured in a particular study or studies (and it may be the study wasn’t designed to assess those particular areas). But there also may be confounding variables or issues which have led someone to perceive an unproven intervention as beneficial.

I am not in favor of ignoring research findings, however, I do acknowledge that research has its limitations. Deciding to ignore peer reviewed and published research findings means that you have elected to go off on your own and this is tricky business especially if you are choosing to ignore safety advisories. As eager or sometimes desperate parents and individuals seeking improvement and hope for CP, it is easy to be tempted to ignore research in the hope of finding that someone has the answer or many scientists were wrong. As I stated in my post about HBOT, making decisions about alternative treatments without a body of research to review is one of the most stressful aspects of caring for our daughter. However, in a case where there is robust amounts of research on a particular intervention, choosing to ignore current findings is different territory altogether.

Yes, in one case we are ignoring the research findings. I am choosing to operate off of my own observations and bias, and it may very well be that my loyalty to this intervention is misplaced. I may be wrong that Maya is benefitting in small but important ways from this intervention and researchers just haven’t been able to capture those benefits in their analyses. This is precisely the kind of reasoning this panel is hoping to help parents and individuals to avoid. Point taken! I will keep this in mind and continue to critically evaluate the perceived benefits I have identified and what else they may be due to. I also encourage other parents and individuals to do the same especially when there are financial sacrifices at stake and/or especially safety concerns.

Now for the panel’s analysis:

**Please remember that the following graphics are for educational purposes only. The information presented here has been extracted from the following article published August 21, 2013 in Developmental Medicine and Child Neurology. The information discussed and presented in the comprehensive twenty-six page review has been simplified to offer you some of its highlights. It’s important to note that additional topics and nuances about the information presented have been discussed within the article.**Always consult with your physician about medical treatment and advice.

Here is a link to the study on PubMed: “A systematic review of interventions for children with cerebral palsy: state of evidence”

Below are the graphics I created to present the information from the study. They also had graphics that were used in the study and they were more comprehensive than what we have here:

The first graphic depicts their evaluation of evidence for improving motor activities. If you are having trouble view the graphic you may use this link

The next graphic outlines the panel’s assessment of Spasticity Management findings. For easier viewing you use this link to the graphic.

 

The next graphic depicts the panels review of interventions for improving muscle strength. Here is the link for better viewing.
The final graphic presents the panels findings about Contracture Management. Here is the link for better viewing.

 

Musings about Maya’s Food Sensitivities

A few weeks ago we figured out that in addition to being lactose intolerant Maya is gluten intolerant. How I came to figure this out is a longer story, but it really surprised me despite the recent media hype surrounding food sensitivities. Don’t misunderstand me. I have friends and friends whose children have severe food allergies. Both myself and my husband have more than a small problem with dairy. Food allergies and problems aren’t a joke, phase, or craze, but I always take the latest wave of popular medicine with a grain of salt.

Maya has a flair for drama so before figuring out this problem we chalked up her persistent whining as a habit she had gotten into. When it comes to CP it’s already difficult to sort through symptoms and discomfort and determine their origin. So imagine my surprise and guilt when the evidence for Maya was clear enough for me to empty our pantry and start preparing gluten free meals for her. Her ongoing complaints about headaches and stomachaches stopped within two days of removing gluten from her diet!

Here is the interesting piece: For the last two weeks Maya’s spasticity has felt less to me. In fact, one of her therapists brought this up (without me saying anything) and asked me what we were doing differently. I wasn’t sure if this was simply a regular fluctuation in her muscle tone so I decided to stand by and observe. Three weeks later, the reduction in her overall spasticity remains the same to me. How much I can’t quantify. Could it be coincidence? Perhaps. I don’t have clear research here, but I am her parent and I have been working with her body and helping her to move her entire life. Something feels different to me.

Here are my questions:

Is it possible that if her spasticity is truly less could it be due to removing foods from her diet which her body was having trouble processing?

Is it as simple as she was uncomfortable every time she had something with gluten (because HER body was having trouble processing it), and therefore her muscles tightened in response to that discomfort like when people clench their muscles in response to pain?

Is there something deeper that happens to the nervous system when the individual has difficulty processing a food and can that affect muscle tone?

Aside from having an intolerance or food allergy I wonder if there could be links between food and muscle tone? What if researchers could identify specific foods that were triggers for increasing or reducing muscle spasticity in the individual or even the CP community?

Does having a neurological condition such as cerebral palsy possibly make the individual more susceptible to having difficulty processing certain foods?

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Am I saying gluten exacerbates spasticity and you should start cleaning out your pantry? NO! But for Maya eliminating two foods which she was having a lot of trouble processing alleviated her headaches, stomachaches, and after removing the gluten, seems to have coincided with an improvement in her spasticity. Maybe it’s simply her muscles relaxing because she isn’t uncomfortable anymore. Maybe it’s coincidence. Again, I don’t know and I am not making any claims beyond noting some observations and correlations I have recently made in my own child.

In the last six months I have seen many reports of studies looking at connections between the brain/nervous system and gut, as well as more focused research on this subject particularly within the Autism community. Perhaps in the future we will know more about how diet and the nervous system relate to one another (or don’t). For now, I will continue to observe Maya’s spasticity and feel grateful that we were able to figure this out and that she feels better.