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?

_______________________________________________________________

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.

Maya’s Dad took off his emotional blinders today

We were helping Maya with her homework last night. It was hard for her and we have to continuously find creative ways of helping her learn and process information in meaningful ways. Many kids struggle with homework and learning so I take it in stride and focus on finding her learning path. But something finally got to her dad in the mix of this and he said to me this morning, “I hate to see her struggle.” “So many things are hard for her.”

It’s rare that Maya’s father takes the emotional blinders off. I am glad he took a few minutes to sit with his feelings and share them with me. We both try to maintain our focus on what Maya CAN do and work toward HER next step. But yes, on occasion our feelings of pain and sadness about how Maya struggles must come out so that we can move past them. Sure, Maya CAN do many things, but she does struggle to accomplish many daily tasks most people take for granted. No matter what types of challenges our children face in life (large and small) parents can’t help but to feel compelled to want to take the struggle and pain away. It’s our instinct isn’t it? Struggling to achieve or overcome obstacles is healthy and a part of moving toward a strong sense of self. Ensuring that a child with a disability has the opportunity to feel successful is the challenge we continue to work on as Maya’s parents.

The Bigger Issue about the FDA Warning Against HBOT Treatment for Cerebral Palsy

I  came across an article today on Disability Scoop about the FDA issuing a warning to consumers regarding the use of hyperbaric oxygen therapy for Autism and Cerebral Palsy.

Here is the concern stated by Nayan Patel of the FDA:

“Patients may incorrectly believe that these devices have been proven safe and effective for uses not cleared by the FDA, which may cause them to delay or forgo proven medical therapies,” said Nayan Patel, a biomedical engineer at the FDA’s anesthesiology devices branch. “In doing so, they may experience a lack of improvement and/or worsening of their existing conditions.”

I am a firm proponent of research based treatment for many reasons. I believe society needs a grounding point for gauging safety risks and efficacy of treatments. Following protocols to move treatments into the main stream and working to have them covered by insurance will also make them accessible to the broader population.

Here is the rub. The CP community doesn’t have robust funding for research. What is currently considered conventional treatment for CP doesn’t even have a clear body of research evidence behind it that proves its efficacy. During the CP Alliance webinar on stem cells back in May of 2013 Dr. Iona Novak stated that current therapies for CP have an estimated 4-10% gain or improvement for the individual. So, we don’t really have much at our fingertips to help our children, or for adults to help themselves. Parents of children with cerebral palsy are often forced to make difficult decisions and I propose many try unproven treatments based on empirical evidence and word of mouth. The alternative is often to stand by feeling helpless and hopeless.

If the FDA is so critically concerned about the use of alternative treatments, they might consider that at least when it comes to cerebral palsy, that most everything is “alternative” and/or “off-label use” for this community. I agree this needs to change.

This is why I am working to bring support and attention to cerebral palsy. We need funding for research to explore new treatments and discover what is safe, effective, and possible. CP doesn’t have to be a maintenance condition, nor should parents and adults with CP feel compelled to put their children or themselves at risk physically and perhaps financially trying to find ways of improving this disorder. The real issue for CP is that the advocacy and financial support for research hasn’t been there and we need to change this. We also need agencies such as the FDA to connect with other agencies and organizations to understand and work toward making these changes.

Parents and individuals will often explore alternative treatments and possibilities when they don’t see the answers or possibilities emerging to help them in the way they expect. It’s happened since the beginning of time. All researched and proven treatments once started out as a notion, idea, or possibility and usually involved people taking risks upon themselves to see what possibilities or potentials were out there that may help them. Have we tried alternative therapies with Maya? Yes, we have. And evaluating alternative options and their potential risks is stressful, confusing, and one of the greatest challenges we have faced in trying to help our daughter.

I believe and will work toward building support for this community and bringing awareness to larger issues such as what I present here. Potential treatments need to be studied and evaluated formally in our population (and it’s categories) so that scientists can determine with as much clarity as possible what we know, what we don’t know, and how we know it. Over time more focus and support on the cerebral palsy community will hopefully lessen the intellectual and often financial burden facing many parents and adults with CP today who continue to wander through unchartered territory looking for a way to make a better life for their child or themselves.

BTW, isn’t interesting how they don’t mention cerebral palsy in the title of this article?

-Michele, CP Daily Living

CP Daily Living’s Road Travel Essentials

Our family loves to travel. Getting away rejuvenates us and we rely upon our family trips for that much needed change of scenery and break from routine. Sure there are surprises we stumble upon that require creative troubleshooting. Facing new accessibility challenges bring out different emotions for all of us yet, in spite of these issues, we find we need to get away as much as possible. It has taken us a few years to get the hang of what basics we need to travel comfortably with Maya (and to find them). Since we just returned from a road trip I thought I would share the list of items we have compiled over time to make our trips easier. Perhaps you will get some ideas from this list or share some of your own. Although our daughter has cerebral palsy, we hope this list may also offer ideas that are helpful for any family who has a child with special needs.

Recaro Monza car seat by Thomashilfen with swivel plate accessory (swivel plate is sold separately): This is our current alternative to having a wheelchair accessible vehicle. The swivel plate makes transfers so much easier now that Maya has gotten taller and heavier (my back thanks this company every day).

Tray for Maya’s car seat: Having a tray to use in the car is very helpful. There are some portable trays for travel you may wish to try or research so that you may not have to wonder whether your car seat comes with this option (and spending lots of extra money for it). Maya’s first comment about the Thomashilfen’s Recaro Monza tray accessory was, “Why doesn’t it come with a cup holder?” It was a good question and we found a few other issues with it. It isn’t easily cleaned, and until recently Maya wasn’t tall enough to use it (despite it only coming in one size). We used it on our most recent trip with moderate success. I have given Thomashilfen’s owner feedback about the tray and they have been interested in exploring ways of improving it moving forward (all changes require test crashing).

Rooftop carrier:  We bought ours through Craig’s list but it originally came from Sears. It’s given us an economical way to add storage space to our small SUV. Just remember to separate your essentials so that the person loading (ahem to Maya’s dad who always loads the top carrier with 2-3 essentials for the day of travel) doesn’t put anything up top that you may need during your ride.

Maya’s wheelchair (by Ki mobility) w/tray accessory: Regardless of which wheelchair your child has we were adamant that the one we chose for Maya must have an option for a tray. It’s a huge help when eating at places where her wheelchair doesn’t allow her to reach the table, it also is allows her to have another workspace without transferring her to another seat.

Dyno all-terrain stroller:  Our all-terrain stroller is one of the most beloved equipment purchases we have ever made. It has opened up a whole new list of activities/scenery for Maya and our family to experience together. We can take her on the beach, pushing through the Carolina dunes without stressing over whether to rent a separate beach stroller (if they even have them), and we can now take her on hiking trails. One of the reasons we chose the Dyno is because it was relatively lightweight and folded which allowed us to easily store and transport it in our car. It also has a dynamic seat (it moves with Maya when her spasticity kicks in) which supports Maya well. It was an expensive investment but we saved some money by purchasing a demo model. Also, we felt confident with this purchase since the Dyno has been designed to offer lots of room for growth. Depending on your child’s positioning needs and abilities you may consider having an all-terrain chair for use full-time, rather than having to purchase two different chairs. You may wish to review a blog post I wrote about our first wheelchair purchase which includes information about what mistakes we made and what we learned going forward. 

Special Tomato Soft Touch Sitter: A lightweight and portable supportive seat for Maya to use during mealtimes. We don’t bring it to restaurants because it is quite large, but it’s been very helpful to use when we stay in someone else’s home, condo, or hotel room, allowing Maya to access the same table where everyone else is dining or playing games etc.

Toilet chair: They don’t make the Rifton one we use anymore, but I wish they did (this one by Leckey is similar). It’s simple, it works, and Maya is so comfortable in it. The one downside is that we have to clean it out, but it makes transferring her to the toilet easier because it sits low to the ground. We do have the Rifton Blue Wave  which is very easy to travel with, but, Maya has trouble positioning on it as well as she positions on the old style Rifton where her feet touch the floor.

Kids adirondack chair: a conventional outdoor chair Maya’s preschool teacher found for her at Toys R Us. I have never seen it online. It isn’t perfect, but it works better than anything else we have tried that sits close to the ground and it can be used outside. While putting this post together I came across a few equipment pages and one company that suggest using your child’s bathing chair as a floor sitter (outside too). I guess it would depend on the type of chair. I am pretty picky about keeping things clean, but it certainly is a way to minimize the equipment you bring.

Bathing chair: The model we use for travel is no longer made but it is very similar to the Minnow Bath Support by Snug Seat. At home we use another bath chair that is bigger and not as easy to travel with (I bought the Minnow first hoping it would work for travel and home). It wasn’t until recently that Maya was able to use the bath chair similar to the Minnow. Her pelvis used to slide forward and we had to constantly adjust her while we bathed her. When she was younger we were able to use bathing pillows and/or get our bathing suits on and get into the bath tub with her to bathe her. If you are in the market for a bath chair for your child and like to travel you may consider looking at the TubDipper. It’s very compact and lightweight. It may not work in all situations since using it requires a certain tub ledge width. We did not purchase one because we wanted Maya to have the opportunity to be more upright when we bath her and the TubDipper doesn’t allow for that. Like the Minnow it can be hung on a hook for easy storage.

Special Tomato Potty Seat with storage bag: After Maya outgrew the toddler toilet seats, I began looking for something we could use at home and when we travel that would help keep her from sliding into the toilet. This toilet seat has helped her feel more relaxed therefore making it easier to go to the bathroom. It doesn’t offer her all of the support she needs but it is a helpful intermediary step between having nothing at all, and having her more elaborate positioning seat which is not easily taken in and out of bathrooms.

Hand sanitizer, flushable wipes, and mini Lysol stored in the outside pouch of our Special Tomato Potty Seat bag

Cool Gear Travel Potty: When Maya was younger we used to carry the Cool Gear Potty Seat. It had some quirks (it was sometimes hard to open the storage compartments) but it worked really well for a while and was so easy to transport. You could even use it in the back of a minivan.

Custom changing pad or Multi-use Pads: Great for changing your child on the run. We have a custom made cushioned pad from the seller linked above, and have purchased some extra large plain white changing pads with wipeable backings from Babies R Us. At 27×36 and $11.99 (at the time of this post) for two the multi-use pads, these pads are economical and large enough for use well beyond the intended baby and toddler years. We keep them in every bathroom in our home. They offer a clean and dry area for getting Maya dressed after using the bathroom, or for dressing her after bathing or swimming.

Outdoor wipeable and/or zippable picnic blanket: Many retailers sell these. I think I found ours at Target. They are great for rest stops or relaxing outside and by the beach.

KidCompanions Chewelry: Maya has trouble sitting still. She usually needs to have something in her hands to fidget with in order to feel relaxed. For the past few years she has been in the habit of picking her gums. She relies on her Chewelry to help her overcome this challenge especially during long car rides.

Sea-Bands: Can I say unequivocally that these help Maya beyond the placebo effect? Nope. But, we have used them since she was an infant and now that she is older she is adamant that they often help her overcome motion sickness in the car. She won’t go for an extended ride in the car without them. We bought ours at our local pharmacy.

Wet/dry bag: We started ordering these bags when we were using cloth diapers with Maya. One day I asked the shop owner to make us a wet/dry bag that attaches to the back of Maya’s wheelchair. We are hooked on them now. We can bring extra clothes and have two compartments to separate her dry clothes from her dirty or wet clothing.

Snacks for constipation: I recently heard about the blog “My Whole Food Life” from a close friend who is making changes to her family’s diet. It turns out that several of these blogger’s snack bars and “cookie dough” bite recipes are one of the most powerful constipation remedies we have found for Maya. Having these snacks in addition to lunch or breakfast made with Ezekiel bread, keeps us all going. In the past we used Fruiteze and it was very easy to bring on the road. However, Maya prefers the taste of the snacks I prepare from this blog to eating the Fruiteze.

Aprons-A friend made Maya several adorable aprons after seeing my post about a children’s apron we were using as an alternative to a bib. They have been wonderful helpers that allow Maya to feel comfortable exercising her fine motor skills at the dinner table without messing up her clothes. You can find kid’s aprons all over the internet and if you want something special you may wish to find a seller on Etsy to make some custom for your child.

Squeezie balls: When Maya gets angry she likes to have a squeezie ball nearby. Be mindful of your child’s age and/or whether they put things in their mouth before deciding what to purchase.

Small cooler for medical supplies and/or a medical supply bag: This approach helps us keep medicines at the right temperature (some of ours require refrigeration) and handy for finding them quickly while we are on the road.

Wacky noodle and a few sheets of rubber grip style shelving paper (not slick): We have learned from therapists the many creative ways of using wacky noodles in a pinch to help with positioning. Also, we have found many uses for the rubber style shelving paper including keeping Maya’s dishes from sliding while she is eating.

Unicorn Dream Lites Pillow: Maya loves all things that glow in the dark, and this pillow projects stars on the ceiling so that we have a traveling star show.

“Wall music”: Maya’s name for the HomeMedics Sound Spa Lullaby machine. I don’t know why she is obsessed with this but she loves to have it on every night along with her stars. It projects pictures on the wall or ceiling and plays music/soothing sounds as well.

Maya’s personal music play list: Maya has always loved music. She can sit in her room for an hour just listening to the radio and playing with one of our dogs. She is very particular about what she will listen to and for several years she has looked forward to her dad or grandpa making her a personalized music play list for traveling and/or bed time.

Video monitor: Maya has seizures and when we travel we may not always stay in the same room with her, or she goes to bed before us. Our video monitor helps us to be able to keep an eye on her. We purchased one by Summer Infant similar to what is linked here. I am sure there are many good options on the market.

Bed cover for accidents: I was so tired of stripping Maya’s sheets in the middle of the night. I found a cover for on top of Maya’s bed sheets and it’s made managing accidents much easier. Although we purchased the one linked and like that it tucks in under the mattress, there are others on the market that are larger and less expensive such as this I found on Amazon.

Bed rails: We have two kinds we have used. One set is called Bed Bug Bumpers. They are made of foam, go under the fitted sheet, and when we have travelled by plane they fit in our suitcases or I shipped them to our destination. We also use a set by Summer Infant. The part that slides between the mattress and the box spring folds up so we can usually slide them on the sides of the trunk when we pack the car. There also have been a few times we placed a mattress on the floor for her and there are some kids and adult inflatable mattresses that you can travel with as well.

Window shade: Great for when the sun is in Maya’s eyes and she has had difficulty moving her head to avoid it. It’s also great for when your child wants to nap since they block the sun or lights from coming through the window.

Essential stuffed animals: We bring a few of Maya’s most current favorites. They are Ponyo, purple bunny, and Lena Luna the lamb. Maya added Luna to Lena’s name (the company gave her the name Lena) because she liked Luna better. We kept  the name Lena as well so that Lena Luna would know we were talking to her.

Reusable no spill cups with straws: You can usually find these in the grocery store. Maya is not able to drink out of a cup without a straw. She also has difficulty holding onto cups so these are great since they come with a lid and they don’t usually spill (put the straw in after you put the lid on to avoid spills or leaks).

Flexible straws: Most restaurants don’t have flexible straws and in the car we use them (since we have to wash the re-useable ones). It makes it easier for Maya to focus on holding the cup rather than putting additional energy into positioning the cup just right so that she can drink out of the straight straw.

Gyro bowl: some parents love them and others find them less than helpful. For Maya, she has the hang of holding it and it gives her some extra protection from having her goodies spill in the car. Some parents report that their children figure out how to dump everything out anyway. There are other types of snack holders that help prevent spills but Maya has a harder time negotiating anything with a cover.

Paper towels and wipes: for the occasional spill or messy hands in the car

Ipad: Sometimes Maya watches movies from her seat (the Monza has its own audio speakers and plug), but it’s also great for her to play games and educational programs on the go.

Glow sticks: Again Maya loves anything that glows in the dark and can spend an hour playing with a glow stick.

Maya’s play doctor kit: Maya loves to play doctor. She can hear a bruise coming to the surface of your skin on the other side of the house. Her doctor’s kits gives her hours of fun and it’s small and portable.

Bubbles: On occasion Maya is bored when we have down time on vacation. She isn’t much of a television watcher. So, for less than a dollar Maya will squeal with delight when she or someone else blows bubbles.

Extra blanket: Despite always being warm Maya has surprised me over time by requesting a blanket for longer car trips. She says she gets cold in the car and I think it helps her to feel more comfortable as well.

If we rent a mini-van for a trip Maya’s Rifton trike comes along too.

Finally…we always bring a pain reliever with us. Those frequent transfers in unfamiliar and untidy public bathrooms are a recipe for a sore back.

What are some of your favorite road travel essentials?

When we return from our trips we will now be using the new website Accessible Travel Reviews website started by another family who loves to travel and has a daughter who is a wheelchair user with cerebral palsy as well.

You may wish to visit other parts of the CP Daily Living website related to travel. We offer information and insight about some of our practical experiences related to traveling as well as related resources:

Related CP Daily Living website sections:

Travel

Using Public Restrooms

Accessible/Adaptive Activities & Sports

The Struggle to Stop Viewing Our Children Through Clinical Eyes

It’s so easy for us parents to become lost in thinking about how our children compare with their same aged peers. From an early age, children at risk for developmental delays/disabilities are tested, categorized, and monitored. There are some good reasons for doing this such as identifying and tracking areas that may need support. But, there are also some potentially negative outcomes as well.

While seeing our children constantly evaluated and measured by medical and educational professionals, we can easily become accustomed to viewing our children through the same clinical and comparative lenses. We often become stuck looking at what isn’t working for our child instead of appreciating and nurturing what is. It’s hard for parents to switch from achievement based goals and hearing what needs to be done to support our child’s development, to simply being with him/her without these thoughts.

Over time Maya’s father and I have focused on setting boundaries that help us to define when and where we will approach Maya with “clinical” eyes and “critical” thinking. Maintaining these boundaries are harder some days than others. However, this strategy has helped us move further away from the tendency to persistently evaluate Maya. Now I don’t dwell too long or intensely on what she can’t do or what she may or may not do later. I try to leave the critical thinking and clinical type of analyses solely for planning her therapy schedule. The rest of the time I focus on enjoying and recognizing the spunky, sensitive, determined and insightful person Maya has become.

 

 

Update on Stem Cells & Cerebral Palsy: Summary of the CP Alliance Webcast

The following is a summary of the May 21st 2013 Webcast “Stem Cells & Cerebral Palsy: The Promise and the Progress”, presented by Cerebral Palsy Alliance in Australia: 

Main topics to be covered:

What does the future hold to prevent, treat, or even cure CP?

What is fact, fiction, or somewhere in between?

What has been achieved and what may be achieved soon?

Summary of Dr. Iona Novak’s presentation-Head of Research at CP Alliance in Australia

Why are researchers interested in exploring stem cells for CP? 

We need better/more effective treatment for CP and it’s related conditions. Current interventions and treatments offer typically only 4-10% gain or improvement. According to world wide CP registers we have the following statistics related to CP and some of its secondary associated conditions:

1 in 3 cannot walk, 1 in 4 cannot talk, 1 in 4 have epilepsy, 3 in 4 are in pain and some cannot communicate it, 1 in 3 have hip displacement, 1 in 10 are blind, 1 in 5 have a sleep disorder.

One of the most under-recognized problems with CP is pain and this is an aspect of CP that they would like to do something about. Some people with CP can’t find relief and/or talk about the pain they feel.

Summary of Dr. Megan Munsie’s presentation-Head of Education, Ethics, Law & Community Awareness Unit at the ARC funded Stem Cells Australia Initiative

Our body is made up of over 200 types of cells. The nucleus of the cell tells it what to do and codes for genes. Different cells of the body look and behave differently. Different cells express different genes.

What is a stem cell?

A primitive cell that has the capacity to grow into one or more specialized cells. It has the capacity to grow into a copy of itself. It can repopulate tissue. Stem cells are being used to understand more about disease. Researchers are using them in the lab and with different drugs to see where they may be able to make a difference.

What is a blood stem cell?

Blood stem cells are the most well known and come from the bone marrow in the long bones. Many people have heard of bone marrow transplants where cells that are not functioning correctly are replaced with new ones. Can we use blood stem cells and their applications as an example from which to apply similar principals to other types of stem cells? It may be a bit more complicated than what we can currently do with bone marrow, but it’s a concept researchers can potentially begin to explore.

What are MSC’s?

Also found in the bone marrow they are a companion cell to blood stem cells and they can dampen potentially harmful inflammatory immune responses.

What is cord blood?

Used since the 1980s, it’s isolated from the placenta and can be processed and stored for later use. Many different types of cells can come from cord blood. At the moment the only proven stem cell treatments are for diseases of the blood and immune system, some skin graft treatments and some causes of blindness.

All of the organs of the body have stem cells even if the organs are not inherently regenerative. The is a new concept. How do we recruit cells from different organs and get them into activity? This is a big area of research!

What are embryonic stem cells?

Scientists can grow these since discovery of them in the late 90s. They can grow them into lots of different types of stem cells. Embryonic cells have a large capacity for change which makes them unique. Researchers are just starting to harness their potential.

What are IPS cells?

Discovered in 2007 by a Japanese researcher who received the Nobel Prize last year for his discovery. He was able to change four genes in a skin cell and turn it into a stem cell with pluripotent (can differentiate into many different types of cells) characteristics. The Japanese government is investing lots of money in stem cell research now.

There are different types of stem cells that are beginning to be tested in clinical trials throughout the world.

Dr. Munsie cautions people about using Google when looking for information about stem cell treatments. She encourages people to discuss what they find with their medical professionals:

It’s tough to work out which sites are discussing clinical trials and which are treating people. Stem cells have enormous potential but testing for safety and efficacy needs to be properly established first. Dr. Munsie is very wary of clinics offering to treat people with a wide range of problems and complexity using one approach. She cautions consumers to think twice, and go to your doctors who don’t have a vested interest in selling an expensive product.

Dr. Euan M. Wallace-Director of the Ritchie Centre and the Carl Wood Chair of Obstetrics and Gynecology at Monash University.

Dr. Wallace limited his discussion to cord blood cells and CP:

1. According to Dr. Wallace, experimental data suggests strongly that giving cord blood cells to children at very high risk for developing CP may prevent them from developing it. Clinical trials are underway around the world that are looking at this possibility now.

2. What happen when you give cord blood to children who already have CP (in order to treat them)? No animal studies have investigated the use of cord blood where there is an established early brain injury (and the animal studies typically precede the human studies).

Historical use of cord blood:

Twenty-five years ago Matt Farrow was a patient of Dr. Joanne Kurtzberg, current Chief Scientific Officer and Medical Director at Robertson Cell and Translational Therapy Program at Duke University. Matt was five and had Fanconi’s Anemia which at the time people typically died from before the age of 10. Dr. Kurtzberg collaborated  with a researcher and physician in Paris so that Matt could receive the first cord blood transplant. It cured him and saved his life. He is now 30 years old and married with his own children.

At the time Dr. Kurtzberg and the doctors she collaborated with thought that Matt Farrow had a 10% chance of being cured of that disease and they still did it. Today over 30,000 people have received cord blood transplants for blood disorders and blood cancer. Dr. Wallace would like to see researchers put effort and resources into exploring stem cells for CP. He wants to see what the results would be. **More info from CP Daily: Dr. Kurtzberg is currently conducting a clinical trial in the US on the use of cord blood in CP. The trial is expected to be concluded in 2014. Dr. Wallace definitely is pushing for Australia to start their own clinical trials as well.

Return to summary of Dr. Wallace’s presentation:

There was a recent South Korean trial using donated cord blood that was published in a journal called Stem Cells. There were 90 children who participated. There were three groups (included in this trial were also the use of EPO and cyclosporine) within the trial and all groups improved . There were some questions as to whether all three groups progressed because of the intensive rehab and/or because the children were getting older as the trial progressed. The biggest improvement was in the 31 children who received cord blood. Children less than 3 had the best reported improvement. The closer the blood match of the participant and donor, the better the outcomes.

There were no dramatic changes in the Korean clinical trial but Dr. Wallace believes it showed sufficient improvement for launching a national trial in Australia.

Summary of Stephen Archer’s presentation-Parent contributor who pursued stem cell treatment at Duke University

Mr. Archer has a son Zach and at the time they pursued getting him a cord blood transplant he was 5.

Zach had a stroke (of unknown cause) which caused his CP. He has right-sided hemiplegia. He has muscle spasticity in his lower leg and upper right arm. They began using serial casting and Botox at an early age. Zach started having seizures at 2 years old. In five years anti-convulsants had not had much effect and it was not uncommon for him to have up to 100 seizures per day. Epilepsy was thought to be unrelated to his stroke when doctors evaluated him for surgery (to try and address his seizures) so the surgeons would not proceed. The family kept looking for other possibilities/treatments.

They investigated the use of cord blood but couldn’t get Zach infused with his own in Australia. They were able to arrange to take his cord blood to Duke University where they asked Dr. Kurtzberg to provide one treatment not associated with a clinical trial (Mr. Archer mentions the challenge of having to take multiple trips overseas if they did participate in the US clinical trial). *Note from CP Daily Living: The clinical trial taking place at Duke includes three visits over a three year period but only one of those visits includes the cord blood transfusion. The family isn’t told which visit includes the administration of the cord blood. If the Archers participated in the clinical trial it would have been free (except for travel expenses) versus the $40,000 (which included travel expenditures) they spent to have the transfusion done outside of the trial.

Outcome: Treatment was November 2010 and they have not seen significant progress or changes. Mr. Archer doesn’t think the treatment was a “failure”. He felt they had to give this a try especially since it was considered by their consulting doctors to be a “no harm” scenario for their son. He said he would do it all over again despite the expense and outcome.

*Despite Mr. Archer saying that their consulting doctors felt there was “no harm” in their son receiving a transfusion of his own cord blood, I personally would like more information about what has or has not been studied or recorded in the literature with respect to autologous cord blood transfusion and potential risks.

If you would like to watch a recording of the live Webcast you may view it by clicking here.

 

 

Cerebral Palsy: An umbrella term unifying our community

I have been studying the US and international CP community intensely over the last year. I have read CP literature and I have spoken with doctors, leaders of CP organizations, individuals with CP and many parents. While analyzing the gaps in our US CP community advocacy, I have repeatedly been told that the different presentations of CP may explain the recent historical lack of fervor in CP advocacy efforts.

Could it really be true that the CP community cannot rally around a CP diagnosis and advocate with the same unity as other disease communities just because CP has many different presentations? I really question the validity of this. Yes, to a degree the way that CP affects the individual and a family may influence their desire and ability to advocate. Some with mild CP may not care to advocate, and perhaps those families with children who require more complex attention, may feel too exhausted too advocate. This is understandable. Not everyone is going to be able to advocate, and certainly not all of the time.

However, if we look further, I propose that the CP community isn’t so different from other communities doing advocacy work. Many diseases have multiple mechanisms of origin/causation and presentations of their conditions yet rally around a generic diagnosis. Cancer is one obvious example. It affects individuals in thousands of different ways ranging from rapidly terminal to easily curable. Still we have general cancer organizations such as the American Cancer Society and as the effort has gained further support, more cancer organizations focusing on cancer subtypes have emerged. We may see the same thing happen with CP one day.

How about Traumatic Brain Injury (TBI)? This is another well-organized and well-supported group (further enhanced by military support). TBI likens easily to the CP community. TBI, like CP, is a catchall term with even more variability than CP. In TBI the presentation involves any part of the brain, and has multiple levels of severity from a mild concussion to severe TBI that may lead to death. Still, this group is effective in their advocacy efforts and well supported financially.

I bring this up so that we don’t forget the possibilities and the potential power of our community. Sure, we may find down the road that we have sub-types of CP, but for now, the more we can gather, organize, and have our population studied and financially supported, the more we can learn. In order to inspire change through donations from the private sector, or to affect policy decisions and funding at a national level, we need to make some noise. Our silence tells the world that we are satisfied with our current models, support, and research. This is not the case.

When you see me sharing general information about cerebral palsy or opportunities to give to our community, call a political leader, or send an e-mail, join me in spreading the word and propelling our community forward. I see many of you starting to do this. I feel the momentum building and the organization of our community emerging. Let’s continue to join together and focus on what we have in common so that we can create change.

-Michele, CP Daily Living