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

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

*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.

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.