Botox and Cerebral Palsy: Is it for me?

I am not quite sure why it has taken so long to write about this subject, given that it is definitely within the top 3 topics that come up in my discussions with parents of children with Cerebral Palsy (CP) and other disorders of movement and posture.  At any rate, I will step into this popular intervention with definite interest and plenty of debate experience behind me.

In order to properly frame this rant, I will need to provide some initial feedback on my own personal and professional perspective on the matter.  I do not make any claims that this drug is either good or bad, nor do I have any invested interest in it's use or "non-use".  The consistent mandate of this blog is to provide extra insight and some additional perspective so that the decision as to "is this right for my child" can be made with as much conviction and confidence as possible.  Although my general feeling on the issue may be obvious, the relevant message is not to fall into a overly simplistic "good or bad" mentality.  Many spend more time and effort researching a home mortgage or reviewing their stock portfolio than they do researching an injectable drug.  Again, the appropriate question isn't "is Botox good or bad?"...rather, "is it the right thing for my child and my family".  Once this fundamental question has been asked, then the resultant answer is irrelevant...it has been put through the internal "prism" of the family unit and the appropriate answer has come out of the other side.

Perhaps the most "diplomatic" and productive way to engage in this discussion is to simply convey the fundamental issues that I typically put forth to any and all families that ask me about Botox.  Although there are many different debates that can take place regarding its merit, the main goal of this post is to shed light as opposed to polarize.

1. Botox Defined: 

--- a neurotoxin (trade name Botox) that is used clinically in small quantities to treat strabismus and facial spasms and other neurological disorders characterized by abnormal muscle contractions; is also used by cosmetic surgeons to smooth frown lines temporarily. ---

During many of my discussions with parents, when the generic name for Botox (Botulinum Toxin Type A, for example) is actually spoken out in the open, it generates an initial sense of apprehension.  It should not be forgotten that this particular drug is indeed a toxin (or as the definition explains, a neurotoxin).  Therefore it is important to always keep this fundamental understanding in mind.

2. Big Pharma:

I certainly would not be characterized as an activist...however, the unfortunate reality in todays medical system is that "Big Pharma" are an extremely powerful and influencial group.  This idea is not new and, paradoxically, well understood and accepted.  It is also well known that a large number of the studies on the use of Botox are actually funded by the same pahrmaceutical companies that produce it.  Therefore, it is in the best interest of the pharmaceutical industry to have Botox dispensed as much as possible...which inevitably leaves room for misuse and irresponsible behaviour.

If these first two phases are understood, then the path becomes relatively more straightforward. Any use of prescription drug comes with its own set of risks, therefore full disclosure of the risks involved always create a clearer path.  In 2009, the FDA ruled to include boxed warnings on Botox products:

FDA NOTE TO CORRESPONDENTS

For Immediate Release: August 3, 2009
Media Inquiries: Sandy Walsh, 301-796-4669; sandy.walsh@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA Gives Update on Botulinum Toxin Safety Warnings; Established Names of Drugs Changed

The U.S. Food and Drug Administration today announced an update to a previous safety alert on four botulinum toxin drug products, noting that all of them now have boxed warnings on their labels and have developed Medication Guides for patients, as directed by the agency in April 2009.

The boxed warning cautions that the effects of the botulinum toxin may spread from the area of injection to other areas of the body, causing symptoms similar to those of botulism. Those symptoms include potentially life-threatening swallowing and breathing difficulties and even death.

These symptoms have mostly been reported in children with cerebral palsy being treated with botulinum toxin for muscle spasticity, a use of the drugs that has not been approved by FDA. Symptoms have also been reported in adults treated both for approved and unapproved uses.
The affected products are:

- Botox (new established name: onabotulinumtoxinA)
- Botox Cosmetic (new established name: onabotulinumtoxinA)
- Myobloc (new established name: rimabotulinumtoxinB)
- Dysport (abobotulinumtoxinA) was approved in April 2009 with the boxed warning and is not making any name or label changes at this time.

No definitive serious adverse event reports of distant spread of toxin effect have been associated with dermatologic use of Botox/Botox Cosmetic at the recommended doses (for frown lines between the eyebrows or severe underarm sweating). As well, no definitive serious adverse event reports of distant spread of toxin effect have been associated with Botox when used at approved doses for eyelid twitches or for crossed eyes.

The revised labels also emphasize that the different botulinum toxin products are not interchangeable, because the units used to measure the products are different. To help reduce the potential for dosing errors, the botulinum toxin products have changed their established drug names (often referred to as the drug’s “generic” name). Neither the brand names nor the formulations of the products have changed.

The portion in red is understandibly quite alarming...however, it is not intended as a "scare tactic".  As mentioned before, full disclosure of the potential risk is the responsible path which has lead to the boxed warnings and the further clarification by the FDA that Botox has not been approved for the use of muscle spasticity.  

3.  "Relaxation" VS "Paralysis" 

I have often heard the use of Botox described as something that will "induce relaxation of muscles".  Although it could be argued that this is an accurate statement, it is undeniably misleading.  The reality is that it essentially paralizes the tissue at the injection site...which could be equated with "relaxation" but that would be an gross over-simplification.  I agree that both terms tend to elicit two different extremes (one being very pleasant and the other more frightening), but the reality is none-the-less present.

4. Local VS Systemic:

As mentioned in the FDA report, the effect of Botox is not only local but systemic.  The overwhelming assumption that the drug "only goes where it is needed"...as if it were a "smart drug"...but it is only a simple liquid, therefore it will behave like any other liquid that is injected into the body.  It will leech into adjacent tissues (muscles) and will also enter the bloodstream.  It has been said that the amount that actually enters the bloodstream is negligible, but the reality is that there is no conclusive evidence that supports this.  The effects of free flowing Botox through the heart, lungs, and brain have yet to be determined.

5. Practical solutions to the overwhelming reality:

Having been fortunate enough to interact with a large number of families and family units, I am very much aware that parents are consistently under the heavy burden of information overload and the fundamental challenges that come from competing philosophies and schools of thought.  All of this information may potentially serve only to confuse and frustrate even more.  Therefore it is important to boil everything down into something that is more practical, productive, and user-friendly.

The use of Botox (and other interventions) cannot be given a simplistic "good or bad" designation. Their role is completely determined by the circumstances present within the individual and the undividual family unit.  There are some cases where spasticity is so profound that it generates considerable pain and discomfort which inevitably contributes tremendous stress to the childs quality of life and therefore extends into the well-being of the parents.  In this situation, Botox is an understandable (and likely the most recommendable) tactical solution.  To be precise, the overwhelming priority of comfort and well-being outweigh the underlying risks.

Outside of these extreme cases, a fundamental examination needs to take place.  It is important to remember that muscle spasticity is symptomatic...it is a reflection of the underlying biomechanical / architectural weaknesses.  Therefore addressing the symptomatic manifestations is a productive short-term strategy, the long term strategy requires some focused attention as well.  The typical scenario is that spasticity increases as the child grows and is characterized by progressive muscular tension and imbalance.  This is analogous to a growing tree whose limbs continue to grow while the trunk remains relatively small...the mechanical stress will inevitably contribute to distortions within the trunk which only serves to perpetuate a vicious cycle of degeneration.

In summary, there is no intended condemnation of the use of Botox, rather a presentation of what I consider to be very relevant points of consideration.  They are not subjective statements...they are objective realities.  Therefore it should be considered in the same "vein" as food labelling:  knowing "whats in it" contributes a great deal as to whether or not you choose to buy it".  If, after "reading the labelled ingredients" it is decided that it fits within the value system of a particular family, then it is most certainly the right choice for them.

To conclude, I fully agree with the availability of this option...but it requires a higher level of responsibility and accountability on the part of Big Pharma as well as an acceptable level of formulation and consideration from individual families.

Cheers!



  

Future Technology: Nanotech Yarn behaves like Super-Strong Muscle

I must say that upon reading this article, I was both amazed and excited.  I can't remember reading something that has such profound potential implications within the rhealm of artificial tissue.  Although it is quite early and perhaps too premature to extrapolate future breakthroughs, this is unquestionably a very powerful discovery. 

I had initially tried to condense the information into a specific post, however it is difficult to express this information better than was already done in the original article...therefore I have decided to insert only a few comments and simply attach a link to the article itself.  Given copyright procedure, it is not possible to re-print the article directly here therefore I encourage anyone reading to click the link and have a look...it is quite astounding! 

Although from a non-scientific perspective, it is likely to be interesting...it is probably more exciting to the slightly more "nerdy" enthusiasts.  I make this comment for the following reasons:

1)  The elemental component of Biotensegrity within the carbon nanotubes
The carbon nanotubes mentioned in the article (and illustrated in the video) essentially demonstrate the elemental architecture based on biotensegrity (the combination of tension and compression to form a stable structure).  The fact that the fundamental framework of biotensegrity is found at the microscopic level lends further evidence to the fact that biotensegrity is the "true" biomechanics  from which the human organism is derived. 

2) The passive 4-Bar Mechanics concept
I had recently been sent a video of a lecture given by Dr. Steven M. Levin who described the concept of human locomotion as being a derivative of 4-Bar Mechanics.  I would not be able to do credit to 4-Bar Mechanics within the construct of this post, but I encourage all of the "nerds" to look it up and review it.  The contraction / expansion characteristic demonstrated by the carbon nanotube is remarkably similar to this 4-BAr mechanism.  Given that it is an off-shoot of the biotensegrity concept (Dr. Levin is the creator of the biotensegrity concept), it is further demonstration of the implications of the biotensegrity concept within the context of human functional anatomy

3) Further indications of the importance of structural architecture in human movement
I think this is perhpas the most profound "piece" I take from this article.  It is quite well understood that the majority of focus and study is placed squarely on the neurological / electrical contributions to human movement and rehabilitation.  Although it deserves exhaustive study and attention, the actual amount is disproportionate to the amount of study placed on the architecture itself. To put it simply, it isn't simply about getting the right signal to the muscle...the fundamentals of how the architecture is arranged plays an equal (if not more) important role.

In summary, I hope that this information receives the attention it deserves.  Historically, the more technical (or "nerdy") these posts are, the less they are read...but it IS definitely a potential ground-breaker in my view.  The direct implications are enormous in their own right, but the potential off-shoots of study that will be derived from this could be extraordinary. 

I will attach some useful links to the end of this post that should serve as useful references for this article.   Please click the link to view the article...and enjoy!

Nanotech yarn behaves like super-strong muscle

Cheers!

See relevant links below:

http://en.wikipedia.org/wiki/Four-bar_linkage

http://www.biotensegrity.com/

Beware of the "Quick Fix"

This will be a straight off rant...there are no two ways about it.  The all-familiar "Beware of Dog" sign should spring to mind...something that has been caricaturized in cartoons and comedies many times over.  The literal understanding has always been that beyond the sign lies something that will indeed do you harm.  However, the true meaning is "enter at your own risk".

Tying this into the rehabilitative context should be quite easy to manage...and as the title suggests:  beware of anything that claims to be a quick fix.  Whether the claim is deliberate or lies within a deeper rhetoric, you (care-seeker or care-provider) should stop to carefully process what you are about to engage in.  This statement is quite intuitive and logical...but for some reason when it comes to physical therapy, medicine, or rehabilitation...this logic goes completely out the window.  Building wealth takes time...building wisdom takes time...relationships need time to build...but the rehab world is filled with "quick fix merchants" and "quick fix shoppers" who are all crammed into some figurative Mall with the merchants all putting signs in their windows and the shoppers engage in frantic window shopping.

Steering this rant more towards a specific point, I will refer to a recent quote I found which is quite insightful: Adopt the pace of Nature. Her secret is patience.  Although this quote could arguably be considered just "fluff", it couldnt be more accurate.

 In the adjacent image, there is a tree seemingly "growing through the street".  The more important thing to take away is that slow, gradual, and progressive increments show the most potential and therefore yield the best results.  Through patient, gradual, and deliberate stimulus, the roots have adapted to the environment and have adapted to the architecture of the sidewalk.  Fundamental question..."can this be achieved in a quick fix?"...most defintely not.

The examples of how biological organisms respond and exist are abundant and explicit.  The fundamental understanding that remains to be effectively integrated is that the human organism is not immune to this reality...and any attempts to circumvent or bypass are at best ineffective, if not useless. 

In defense of all of the quick fix merchants and shoppers...not all "beware" signs signal inevitable dangers.  There are indeed some occasions where the Beware of Dog sign is visible, but the dog is nowhere to be seen...allowing you to peacefully slip by.  Therefore, this is not an attempt to dismiss the quick-fix...nor is it an attempt to classify the quick fix merchant.  Rather to highlight the reality that we exist within certain physical realities...and any attempts to deviate are consistently unproductive and "quick to lose".  The idea of "simple" fits well into todays fast-paced world and is likely the most attractive, but the human organism is exponentially more complex...and therefore deserves more intelligent consideration. 

Autism: Connective Tissue Links

The connective tissue "trail" seems to be long and well-entwined beyond most perception.  I have recently read some short articles that propose that fascia/connective tissue enthusiasts are far too "energized" about the topic...which in fact is actually relatively accurate...however, when you stop and take a true inventory of each specific pathology (MS, Cerebral Palsy, EDS, Fibromylagia, Cancer, Lymphedema, etc...) you will almost inevitably find some relevant links that point to connective tissue as a relevant source of potential improvement.  With this reality in mind (and in-hand), I wouldn't characterize enthusiasts as fanatical...rather, they are expressing the physiological "high" from experiencing some intellectual enlightenment.  This enlightenment unearths many "archeological understanding" that brings an inevitable sense of excitement.  This may simply be a fancy way of describing a fanatic...but I think that the main message is that the ethusiasm is well grounded in science rather than some intangible belief or philosophy.

I have recently done some preliminary "excavation" into the world of Autism and have found that there exists a probable connective tissue link there as well.  The intuitive reaction from most would be "how does addressing connective tissue cure Autism"...but this is an altogether wrong question.  The more accurate question should be: "how does this understanding of the role of connective tissue within the autistic person impact my ability to manage and improve their everyday lives".  I do not pretend to think that people with autism do not lead productive and rewarding lives...rather, they are exposed to certain diffculties (whether mild or extreme) with respect to communication, emotional responses, and sensory dysfunction.  Therefore ANY strategy that would directly (or indirectly) contribute to the salutogenetic (promotion of health) approach to life management would be relevant.

This initial "dive" into Autism is quite early...and therefore I lack the necessary knowledge to go into great detail or physiological analysis.  However, I came across an article from the Southwest Autism Research and Resource Center (SARRC) that presented some interesting information on "Physical Findings in Autistic Disorder".  You can refer to the article yourself, however it reports that the most frequent findings among the study group (113) demonstrated hypotonia (47.8%) and connective tissue anomalies (41.6%) such as joint laxity, velvety skin, pes planus (flat feet), and prominent fingertip pads.

Although this hardly represents true, hard, scientific evidence...it does at least suggest some potential connective tissue links (more specifically, connective tissue weakness) to some of the sensory dysfunction that is characteristic of the condition.  It is well understood that connective tissue is, not only a powerful sensory mechanism in its own right, but the architectural "mortar" that supports the central and peripheral nervous system.  To be precise, it has an extensive role in the mechanical AND systemic support of sensory competence. 

Although far from a paradigm shifting revolution, it is a personal "Ah-Hah" moment that deserves some more "digging".  Hopefully the "intellectual archeology" bug does its work!

Cheers!

Neurotrauma: Where is the Starting Line and where is the Finish Line.

This will most certainly qualify as a simple "rant".  I do not have anything particularly scientific to deliver, nor am I likely to mention anything that many haven;t likely already pondered...however, putting pen to paper (or "finger to keyboard", in this case) has always been consistently reliable in helping me to integrate and internalize certain ideas and concepts.  So perhaps this brief post is more "therapeutic" as opposed to enlightening.

Over the last 6-7 years within the CP / Neurotrauma landscape, I have had the privelege of engaging in hundreds of discussions and consultations with families from all over the world regarding the very specific and ultimately unique experience of having a child with some form of neurotrauma.  At face value, it would seem that this exposure and experience would yield some relative sense of "confidence" in being able to accurately identify and effect positive changes in the overall mindset of these families and their extended family unit.  However, the more this experience grows, the more my understanding grows as to how unimaginably complex this world is.  To be precise, it is a tangled web of fear, doubt, worry, stress, and potentially some guilt.  Within all of this mix of emotions, the concept of "where do I start" and "when will I be finished" is often contemplated...but is seldom answered.  Further, there is the additional stress of "what is the right path between start and finish"...which is often clouded and muddied by the background "noise" of competing rehabilitative philosophies and schools of thought.

In many circumstances, I have found that my efforts to "enlighten" and "educate" only served to contribute to the amount of "noise" these families were experiencing.  Although most professionals have genuine good intentions, the reality is that there is no real true concensus among neurotrauma professionals as to the best course of action...even to the extent where there are competing diagnostic definitions!  Therefore I was required to take a step back and search for a more "user-friendly" approach...which couldnt have been more intuitive.

Help to filter out the noise.  Before anyone can understand you, they must first be able to "hear" you.  Therefore, your first attempt should not be to "re-train" or "reprogram"...rather to provide some form of noise-cancelling support so that the family unit is more able to concentrate and think with more clarity and efficiency.  This involves some discussion / exxplanation / "de-briefing" on their experiences to date...how are those x-rays evaluated...what are the systemic considerations of such procedures...what is/are the general perspectives of the medical community, etc.  I equate this to the experience of trying to watch a televison show on an old black and white TV...with white noise and static buzzing on the screen, other channels popping in and out, and sometimes the signal going out completely for a time.  In this sense, my honest and transparent efforts would be the equivalent of the neighbour dropping in to play with the rabbit ears...it is likely appreciated, but often times just as distracting.  Providing some insight into the more global considerations of the specific condition will ultimately generate some overall understanding and therefore result in the establishment of an intrinsic "filter" which contributes to clarity of thought. 

This establishes a relatively reliable "starting line".  Although many wait anxiously for diagnosis, the realities of the journey are still the same...it isn't always necessary to defer your strategy until that point.  With respect to the obvious second question "where is the finish line"...the answer is generally not the most popular.  In truth, no one can responsibly provide the answer that so many people are looking for.  With all honesty and respect, this is a fundamentally wrong question to ask.  Even if someone could magically glance through a crystal ball and provide you with THE ultimate answer...would this determine whether it is "worth it or not"?  This is analogous to a young child setting a lifetime goal of achieving a gold medal in the Olympics and asking "is that possible".  Further, if that goal was never to be achieved, would all of his/her efforts have been in vain?  I recently heard a very insightful and powerful statement from a collegue: families spend so much energy trying to prove to the outside world that their child has value and that they are worth it.  This mindset ultimately contributes to the "white noise" that surrounds them...by establishing "pre-set" standards of achievement and often times unrealistic measurement tools.  The finish line should therefore be honestly and responsibly defined as "unset and undetermined".

Instill an understanding of the "Happiness Quotient".  I will outline the genesis of the Happiness Quotient (HQ) in an upcoming post, but it's beauty lies in its simplicity.  Although it can be expanded in many different ways, it is essentially a balance between a number of oppsing metrics:  Pain/Pleasure, Joy/Fear, Achievement/Failure, Relaxation/Tension, and Satisfaction/Frustration.  Within the everyday life of a child with CP or neurotrauma, there are far too many events that contribute to the negative metrics of this equation.  There is always some consistent muscular tension which may induce some pain as well...inability to effectively communicate to loved ones breeds frustration and anxiety...in many cases, positional changes generate periods of fear, etc, etc.  Therefore, the role of the family (and extended family) partly becomes a source of contribution to the positive metrics.  Establishing those activities that create some form of joy...therapeutic interventions (regardless of their overall philosophy) that generate definite periods of relaxation...and even frequent physical contact.  Hugs ARE therapy...therefore they should be considered as fundamental tools in establishing some equilibrium in the HQ.

Definitely a rant...possibly too "fluffy"...but hopefully somewhat stimulating!

Cheers!