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New Hope - Latest Treatments & Research
 
Where we stand today:

Our belief is that we are both blessed and burdened by our current scientific situation.  The good news is that very few scientists and very little funding is currently being applied directly to understanding treatments for children with Brian Injury.  

This is good news because it means that we are just beginning to explore the possibilities for our children.

It is the BRIGHT Foundation's belief that neither mainstream medicine nor alternative therapies offer a substantial effort to truly understand and help our kids.  It is with this assumption that make the claim that significant hope exists.  Amazingly... the answer is there... but no one has really been looking for it.

Our Approach:

1.) Survey all mainstream and alternative therapies.  Document on this website exactly what is the current state of knowledge.  

2.) Locate the experts globally and enlist them to become scientific advisors

3.) Encourage the experts to document their theory publicly and engage in an open discussion to advance the state of knowledge for the kids

4.) Provide a forum for this discussion both via the website and by organizing real life conferences and projects

5.) Educate and Unite parents to encourage their professionals to operate openly and cooperatively with the goal of advancing the state of knowledge

6.) Work with public and private sources to generate funding to support the most promising areas of treatment

7.) Create a global database of children with brain injury, their treatments and their progress

Techniques such as NDT, Feldenkrais, the IAHP approach, the NACD approach, the Euromed approach, Conductive Education, and Constraint Induced Therapy all draw their partial success on the proven fact that the brain is extremely plastic.  They are in the Neural Re-Organization Camp.

A group of supporters argues that natural plasticity is not enough - this is the Re-Generation Camp. They argue from a very common sense point of view that you must treat the injury before you treat the symptoms. For them the injury is the initial injury to the brain. The symptoms are the abnormal movement patterns resulting from that initial injury. This is the argument between brain re-generation Vs. brain reorganization. They argue that it canít be a bad thing to repair or replace damaged brain cells. 

The key question is whether additional brain cells actually result in improved function. Also is the cost of re-generating those cells, both in terms of time, effort, money and risk might be better spent on other forms of therapy and actually achieve greater results leveraging the brainís natural redundancy of cells. 

At the far end of the spectrum people are traveling to developing countries and injecting their children with unproven stem cells and growth proteins. This is a very risky and expensive approach. Under more controlled circumstances one of our scientific advisors is injecting stroke victims with live brain cells. The good news is that the cells seem to take root and grow with-out adverse effects such as tumors. The bad news is that dramatic improved functional results do not appear to immediately follow. 

A less invasive approach to re-generation of brain cells is promoted by the Hyperbaric Oxygen community. Otherwise know as HBOT, it has been around for many years as a treatment for brain injury. It also has greatly fallen out of favor among the professional medical community. It is still used extensively for treatment of neurological conditions in Russia, China, and even the UK. However, if you talk to professionals from these countries it is seen as a secondary treatment and does not nearly receive the same hype that it is now receiving in the USA were centers can charge as much as $200 per treatment and encourage parents to take multiple series of 40 treatment sessions. 

So if re-generation is not the answer and re-organization therapies have limitations, does that mean that the current approaches can only take a brain injured child so far?  We believe the answer is yes and the data supports it. Every study that we have read, every parent that we have talked to, every young adult that has been through all the therapies has clearly shown the limitations of the existing treatments. Thus our search is to find the next evolution of approach that will take our kids further than the current approaches allow.

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Below is a summary of our understanding of the latest science as of January 2002.  The above theory builds on this theoretical foundation.

1.) Based on the work of all those mentioned in this document, we are confident that significant functional improvement after brain injury is a realistic goal.

2.) We believe that Reorganization (Plasticity) and Pharmaceuticals (Stem Cells and Growth Factors) present the two best areas offering means to achieve functional improvement.

3.) Given the current pace of progress in pharmaceuticals, we believe that plasticity models may yield better short term approaches. (Macklis, Merzenich)

4.) We recognize the importance of self motivation in the learning process and understand why traditional medical therapy models often fail. (Cayo, Urban)

5.) The severity of the injury is obviously a critical factor in determining the effectiveness and focus of the treatment. (Urban, Macklis)

6.) Focused assistance on the targeted functional areas is the key to recovery. (Hogan, Ulrich, Taub, etc.) However, treatment must be based on understanding how that injury results in a "undesired" movement pattern becoming the stable attractor. Opportunities must be presented and facilitated to allow new more desirable patterns to de-stabilize the undesirable pattern and become the stable pattern. (Thelen, Ulrich)

7.) Plasticity is not time dependent. (Taub, Hogan) However, once abnormal patterns become stable they become very difficult to replace. (Thelen, Ulrich) Therefore, early intervention is critical. With the first year of life being the most important. The second year less so, and so on.

8.) Functional achievement and intervention strategy needs to be matched to appropriate developmental opportunity windows. (For example, unsupported walking can not be expected until sufficient muscle strength is achieved) (Thelen, Ulrich)

9.) Measurement and understanding of the factors leading to undesirable patterns is the key to developing a treatment program. Stable patterns are almost always the optimized solution to the interplay of all factors (neurological, physiological, environmental, etc.) The intervention program should provide focused intervention to the factors that are allowing an undesirable pattern to emerge. (Thelen, Ulrich, Hogan, Taub, Merzenich)

10.) The complexity of the functional skill and degree of stability that the abnormal pattern has achieved, are the two factors determining the level of intensity and duration needed in order to de-stabilize the undesirable pattern and establish the desirable pattern. (Thelen, Ulrich, Hogan, Taub, Merzenich)

Currently our major difficulty in our home program is that as parents we do not understand in detail the complex interplay of factors driving undesirable patterns to become the stable patterns. Therefore, we have not been able to develop optimal intervention techniques to overcome some of Alissa's more undesirable patterns.

Personally, I believe a possible next step is to improve our ability to measure the degree to which critical variables are having a normal or abnormal influence on development. However, I am not sure how to go about identifying, isolating and measuring the critical variables.

Admittedly, the options presented in the literature for effective intervention strategies are extremely limited. (A representative list includes hands on therapy which can be very powerful in the hands of an experienced therapist but limited with the parent, robotic assistance which is limited by the complexity of the functional skills needing focus in a typical infant hypoxic injury, tread mill gait training which can only be used after the child has met certain challenging developmental milestones, Constraint Induced Therapy which is best applied to a child with Hemiplegia. This list is very limited and significant work needs to be done to increase the assistive tools that are available to parents and therapists)

Finally, none of the above research cited has specifically addressed global hypoxic brain injuries and very little has addressed rehabilitation in the context of the childhood developmental phase. The research has been verified on Stroke, Downs Syndrome, Spinal Cord injury, TBI and generally in adulthood. However, we have not found significant research on the more complex situation of a injury resulting from global hypoxic injuries early in life. However, based on the principles of dynamics systems theory we believe that the results of the research can be effectively extended to the more complex situation of a injury resulting from global hypoxic injuries early in life. This position is shared by Hogan and Taub and Ulrich is currently conducting research to verify this position.

 

 

Below is a detailed accounting of the historical progression of our research.

Next, I will retrace our journey over the last 12 months to help your understand how we have come to the our current state of understanding. We stated by contacting an old college room mate of mine, Nathan Urban ref1 who went onto to research basic brain function. He gave us a good foundation of understanding the complexity of the problem we faced given the nature of Alissa's Injury. (Alissa suffered an hypoxic injury due to amniotic fluid embolism in mom, apgars of 1 @ 1 min and 2 @ 5 min, CT scan at 4 months showed calcification in the basil ganglia, MR was good at 8 months but showed mylination at low end of scale, microcephaly, feeding disorder, 100% g-tube feed). Nathan also stressed to us the importance of understanding the nature of how people learn. The importance of the natural sequence of learning. And finally, the importance of self motivation in the learning (and rehabilitation) process.

Nathan, directed us to the work of Mike Merzenich of UCSF ref2 ref3 who promotes plasticity as a key mechanism for brain re-organization. Mike stressed to us that our challenge was more complex than those he has worked successfully with, which included children with language learning deficiencies.

Next we found the work of the Christopher Reeves foundation ref4. What impressed us about the work of the foundation was the focused research that was happening with a clear goal to allow Christopher to walk again before his death. Here we spoke with John McDonald who explained the differences and commonalties between spinal cord injury and hypoxic injury. We learned the value of muscle conditioning via Electrical Stim and the role that passive movement of effected limbs seems to play on creating spinal and neural representation that serve as a building block for further recovery.

Next we learned of the work of Ed Taub in stroke victims ref 5 ref6, again we learned the differences between stroke and Alissa's injury. Ed's work on CI confirmed that directed, intense therapy on specific muscle groups produced functional improvement.

Around this time we studied the work of Glenn Doman and the Institutes For Advancement Of Human Potential (IAHP) ref7. In general we found that many of their principles were quite in line with what we were learning from the scientists, so we were very hopeful about working with them.   When we started this foundation we ran into many more success stories and parents who would swear by the program.  We highlight just one of these success stories in our case study section. ref7a.    The overwhelming support that some parents give to the IAHP continues to intrigue us.  We hope that we will be able to report personally on the IAHP some day soon.

We looked at Conductive Education, and other intervention programs. We found that all of them seemed to have some common threads that made sense to us.

Based on these threads and the science we developed a set of guiding principles that we used to help us to focus: These principles are summarized here:

1.) Based on the work of all those mentioned in this document, we are confident that significant functional improvement after brain injury is a realistic goal.

2.) We believe that Reorganization (Plasticity) and Pharmaceuticals (Stem Cells and Growth Factors) present the two best areas offering means to achieve functional improvement.

3.) Given the current pace of progress in pharmaceuticals, we believe that plasticity models may yield better short term approaches. (Macklis, Merzenich)

4.) We recognize the importance of self motivation in the learning process and understand why traditional medical therapy models often fail. (Cayo, Urban)

5.) The severity of the injury is obviously a critical factor in determining the effectiveness and focus of the treatment. (Urban, Macklis)

6.) Focused assistance on the targeted functional areas is the key to recovery. (Hogan, Ulrich, Taub, etc.) However, treatment must be based on understanding how that injury results in a "undesired" movement pattern becoming the stable attractor. Opportunities must be presented and facilitated to allow new more desirable patterns to de-stabilize the undesirable pattern and become the stable pattern. (Thelen, Ulrich)

7.) Plasticity is not time dependent. (Taub, Hogan) However, once abnormal patterns become stable they become very difficult to replace. (Thelen, Ulrich) Therefore, early intervention is critical. With the first year of life being the most important. The second year less so, and so on.

8.) Functional achievement and intervention strategy needs to be matched to appropriate developmental opportunity windows. (For example, unsupported walking can not be expected until sufficient muscle strength is achieved) (Thelen, Ulrich)

9.) Measurement and understanding of the factors leading to undesirable patterns is the key to developing a treatment program. Stable patterns are almost always the optimized solution to the interplay of all factors (neurological, physiological, environmental, etc.) The intervention program should provide focused intervention to the factors that are allowing an undesirable pattern to emerge. (Thelen, Ulrich, Hogan, Taub, Merzenich)

10.) The complexity of the functional skill and degree of stability that the abnormal pattern has achieved, are the two factors determining the level of intensity and duration needed in order to de-stabilize the undesirable pattern and establish the desirable pattern. (Thelen, Ulrich, Hogan, Taub, Merzenich)

We studied and tried Hyperbaric Oxygen Treatment. We talked to many doctors about the possible mechanisms at play. We treated Alissa twice, both times for approximately 40 sessions.  Once at 4 months and we did not notice positive results.  However, due to the great amount of positive comments on HBOT on the internet, we decided to try it again at 1.5years.  Again, we personally did not see the benefits that were so often stated on the internet.  As one of the few parents on the internet that seem to be willing to say anything other than great things about HBOT we have often been criticized by HBOT professionals and proponents.  In an effort to be truly open minded BRIGHT has recruited one of the most outspoken supporters for HBOT, Pierre Marois, MD, FRCP(C) to BRIGHT's Scientific Advisory Board.  With the help of Dr. Marois and others, we hope to help answer the really important questions.  What types of CP is HBOT most effective on?  Why does HBOT help some children and not others?, etc.  To help readers understand a little more of the colorful, but very unproductive debate over HBOT, we have compiled some of the written debate in this reference. ref8  Going forward we be working with Dr. Marois and others to shed more light on the benefits of HBOT. 

We studied the work of the Autism community . What we took away from them was the fact that only a few short years ago, Autism was viewed as untreatable. Now in Wisconsin, Autism is treated with intensive Behavioral Modification programs for 40 hours per week and paid for by Medicare ref9. We set this as one of our goals, "to develop a similarly accepted treatment program that would be accepted and paid for by insurance".

We met the founders of Project ALS ref10. They have raised millions for research into ALS. Like Christopher Reeves they have funded their own directed research team and seen great results. We have a strong desire to have the same resources and influence as the Christopher Reeve and the Estess Sisters but regarding hypoxic brain injuries.

We then turned our focus to the work of Stem Cells and Neruotrophins. We contacted Jeff Macklis of Harvard ref11, Clive Svendsen of UWM ref12, and Doug Kondziolka of Pitt ref13. In particular I talked with Doug about the first implantation of Neural Cells into the adult brain. Doug's study proved that cells could be implanted in the brain safely. It also showed using FDG Pet that the area around the implantation showed increased metabolism. Doug and I quickly came to the same conclusion that this did not imply that the implanted cells grew. It only implied that something caused increased metabolic activity. We agreed that it could be a placebo effect caused by the stroke victims desire to recover and hope that the surgery has done something to help them. Also, it appears that the implantation of cells triggered the production of neurotrophins. Finally, the most important finding of this study is that even with new brain tissue, rehabilitation was needed to teach the cells how to be functional. This conclusion has been the most powerful finding that has come out of my stem cell research. It is shared by all those that I speak to... new cells are not enough, you must teach them to regain any function lost.

Along those lines I contacted Neville Hogan of MIT ref14 I found the following paper to be particularly enlightening ref15. Neville has worked on robotic assisted therapy. His work is wonderfully "application" focused. He arrives at all his conclusions by data. I find he approaches the task with a refreshing enthusiasm and confidence, suggesting that initial successes in stroke victims should be extendable to more complex situations. Suggesting "were there is a will there is a way". His work has confirmed a few important things. 1.) That current therapeutic tests are too course to measure fine improvements. 2.) That focused assisted exercise provided improved results over general therapy. 3.) That improvements tend to come only in the targeted muscle groups. Along those same lines the work done by Beverly Ulrich on treadmill assistance for children with downs syndrome proved the exact same three items.

So how to teach? I turned back to one of the original factors I knew to be critical - "Understanding how people learn". For this I turned to Esther Thelen ref16 and Beverly Ulrich ref17 and their work with Dynamics Systems Theory. I was very comfortable with the Dynamics Systems Theory approach to learning and understanding how it could explain the abnormal movement patterns that develop in brain injured children. Our next step hopefully, is to use their work to produce an effective "predictive model" to take our therapy program to the next level. So that is were I am today.

Home | Donate |About Us | Discussion Group | Treatments and Research | Current Treatments | The Bright Project | Advocacy and Education | For the Professional | News | Case Studies | Contact Us | Advisory Panel | Search