The Challenges Of Teaching Severely Brain-Damaged Kids, As Told Through Donovan’s Story

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Posted on 22nd June 2010 by Gordon Johnson in Uncategorized

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We no longer shut our severely disabled children, including those with traumatic brain injury, away in institutions 24/7, that’s true. But public school systems, mandated to teach the disabled by 1975 federal law, today struggle to find the best way to care for these students. 

The New York Times on Sunday did a masterful job of describing the difficulty of teaching kids with multiple disabilities, with 20-year-old Donovan Forde used as the case study to illustrate the issues and challenges. 

 http://www.nytimes.com/2010/06/20/education/20donovan.html?scp=1&sq=Dononvan%20Forde&st=cse

Donovan has spent 15 years in the New York City public school system. He is blind, wheelchair-bound and has cognitive problems, all the result of a traumatic brain injury he sustained when he was nearly six months old. 

Donovan is one of 132,000 students in the U.S. classified as having “multiple disabilities,”  at least two disabilities and special educational needs, according to The Times. They are part of a group of 6.5 million that now get some kind of special education at a cost of $74 billion annually.

 “Students with multiple disabilities, like Donovan and his schoolmates, can have a wide range of diagnoses, including cerebral palsy, rare genetic disorders and problems that stem from conditions in utero or at birth, some of which have no name,”  The Times wrote.

It is heart-breaking to hear about Donovan’s cognitive difficulties, how teachers shine a flashlight in front of his eyes to get his attention, how he can’t talk, how he can only see shapes and sometimes doesn’t even respond to being called by his name. His teachers, quite frankly, don’t know if they are ever getting through to him. 

“Donovan’s mother, Michelle Forde, likes his special education high school, Public School 79, the Horan School, in East Harlem, where she feels he is welcome and cared for,” The Times wrote. “But she wishes his teachers would spend more time working on his practical challenges, like his self-abusive habit of hitting himself in the face so hard that he has to wear thick white cotton mitts most of the time, even when he sleeps.”

Donovan was born with club feet, but was otherwise healthy. But in 1990, Donovan, nearly 6 months old, was being held by a family friend out on street in Brooklyn when a underaged drive in a stolen car hit them both. 

Donovan fell and hit his head on the pavement, and his heart stopped. A bystander administered CPR and revived him, but he was in a coma for  six weeks, long enough so that the swelling of his brain damaged his optic nerves, leaving him basically sightless.

Donovan’s mother never recovered a settlement for his life-changing accident, either. He  is living in a nursing facility, sharing a room with three other severely disabled youths, where he can get the constant care he needs.

One thing is clear about Donovan to his teachers: He loves music, and makes a pretty good effort to sing.

According to The Times, the trend in educating severely disabled children is to use emotion and human connection to reach them.

“As higher functioning areas of their brains are underdeveloped, emotion moves them at a deeper level, lighting up the same part of their brain, the limbic system, as meaningful music, and possibly creating a bridge to greater intellectual cognition,” The Times wrote.

But read the full story, which starts on Page One and jumps to a two-page spread.

Prior Combat Stressors Adds One More Trap for TBI

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Posted on 18th June 2010 by Gordon Johnson in Uncategorized

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In our last blog, we introduced the reader to the potentially disastrous combination of TBI and PTSD conditions in a combat survivor. But the problem in combat is not just the intersection of these two “co-morbidities”, but the likelihood that a third complicating factor- preexisting anxiety – will also be found in combat veterans.

As we outlined yesterday, the Limbic System is the part of the brain which regulates anxiety and memory. Just as the corpus callosum is the collection of axonal fibers that connects the two hemispheres of the brain, the uncinate fasciculous is the collection of axonal tracts that connect the principal memory and anxiety centers of the brain to the frontal lobes – the thinking and maturity parts of our brain.

See http://www.waiting.com/limbicsystem.html

The principal structures involved include the following;

Hippocampus. The brain’s save button is the hippocampus. It is the part of the brain most important to converting immediate memory to long term memory.

Amygdala. The brain’s anxiety center is the amygdala. It is the amygdala that protected us from predators in the pre-historic times. It triggers our startle reflex in modern times and is the principal culprit in anxiety disorders.

Frontal Lobes. The frontal lobes are where we learn to become adults, where all activity is initiated, decisions made, emotions modulated and judgment’s made. The orbital frontal part of the frontal lobe, on the underside, is essentially the conductor of the brain’s symphony, the part that tells the other instruments when to start and stop playing. The frontal lobes coordinate all activity.

Uncinate Fasciculous. Connecting the above critical structures is the uncinate fasciculous, the axonal tracts that run from one end of the lower brain structures to the underside of the frontal lobes.

A person with a pre-injury anxiety disorder is far more vulnerable to post concussional problems (PCS). In a person with an anxiety disorder, the amygdala is already overreacting to potential anxious moments. It runs “hot” so to speak. When, as a result of trauma, such as a blast, damage occurs to the hippocampus, frontal lobes and the uncinate fasciculous, the information that gets moved across this lower brain circuit gets garbled. When information between the limbic system and the frontal lobes gets garbled, anxiety can become panic, depression can become organic rather than just reactive and the person’s ability to modulate emotions and make decisions, seriously impaired. The combination of pathologies in these areas -coupled with inefficient communication between them – creates a synergistic pathology far more functionally impairing than any one of those impairments might have been alone.

As serious as this premorbid vulnerability is in a civilian, it is far more serious in a soldier. Think of it this way. The amygdala is there to get us to run, without stopping to think. Fortunately for peace time activities in the modern world, our socialization has taught us when not to panic. A civilian has few times when he or she needs to rely on the amygdala. There are few great predators, few brushes with real danger. Thus, our frontal lobes and other emotional centers have tamed our amygdala, in not so different of a way than we tame a pet.

Yet, the amygdala is needed for combat. To survive, a soldier must rely on his instincts and must put his mind into a hypervigilant state. One of the biggest problems that soldiers have reintegrating into civilian life is learning how to stop this hypervigilance. PTSD is primarily a disease where the traumatic emotional stress has so changed the amygdala that it never entirely goes back to its peace time role.

Thus even before a TBI, a combat veteran is likely to have a heightened anxiety. Without that anxiety- the hypervigilance – the soldier may not survive. Depending on the level of previous battle stresses, that anxiety may have elevated itself to PTSD levels prior to the TBI. Thus, the risk of emotional dysfunction is not only increased by the very battle in which the soldier is injured, but also by the pre-injury emotional state.

The irony of all of this is that this convergence of co-morbities is laid upon those we expect to be the toughest. “The Few, the Proud” are those at greatest risk of becoming the homeless, the disturbed, the arrested. Sadly, I can offer no solution other than peace.

 

Too Many TBI’s, Not Enough Soldiers

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Posted on 15th June 2010 by Gordon Johnson in Uncategorized

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Our blog yesterday about the Pentagon’s failure to follow through on mandatory testing for brain injury raises numerous issues worth commenting on, including the military’s outright failure to follow orders, the superficial approach to the diagnosis of brain damage and the magnitude of the problem that is being pushed on down the road to the next generation.  Yesterday’s blog is here: https://waiting.com/blog/2010/06/611.html

The generals in essence are telling Congress that if they properly treated soldiers for TBI, there just wouldn’t be any soldiers left.  They use the term “false positives” but that is really short hand for saying that too many soldiers are showing symptoms to treat them all.  And frankly, the problem isn’t really the cost of treatment or even the availability of treatment facilities, although the second part of that could certainly get to be an issue.  The problem is that if they followed anything close to the protocols for treating athletes with concussions, there might not be anyone left to fight the wars.  You see, if we were talking athletes, we wouldn’t allow them to go back into the field until they were completely cleared of Post Concussion symptoms.  Our military is already scrambling to find enough soldiers to fight two wars.  Put any more on the sidelines and we would have to change our foreign policy.

While I may be one of the few civilians who fully understands the true implications of “no return to play” for soldiers, didn’t we promise to do better with this war?  I have been blogging about the Nightmare of War Time Brain Injuries since http://www.tbilaw.com/blog/2008/06 (read bottom up) and specifically since http://www.tbilaw.com/blog/2008/06/suicide-and-terror-continues-for-our-iraq-and-afghanistan-soldiers.html

This problem with combat TBI is not a new problem.  German, Japanese, Korean and Vietnamese artillery and mortars were far more potent than road side bombs.  And while it is true that we are saving more severely wounded TBI soldiers, the mild and moderate survival rates are likely unchanged since World War I.  What is different is that we have the capacity to diagnose MTBI now and we are supposed to care, because Congress and the American public says so.

The problem isn’t too many false positives.  It is too many positives, too many soldiers with brain damage.  It has always been true, since the day of the club and it will always be true – combat is hard on the brain. That is why  the helmet was invented.  What we as a society have to accept is that if we are truly to “be there” for our troups, we must pull them out of the field when they get a head injury.  That means we either have to have more soldiers or fewer military ambitions and then apply all of the best medicine to help them when they do suffer a TBI. If we don’t, the correlation between soldiers, homelessness and suicide will be the same in 2050 as it was in the 20th century.

Much-Needed Update Of Guidelines To Determine Brain Death Are Released

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Posted on 7th June 2010 by Gordon Johnson in Uncategorized

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There’s lots of injustice in this world, and declaring somone brain dead who isn’t would be high on the top of the list of such tragedies. 

 That’s why I think it’s a good idea that new guidelines for determining if a patient is brain dead have just been issued.  

Essentially saying it wants to take the guesswork out of the process, the American Academy of Neurology Monday released those new guidelines — the first update in 15 years. 

http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2010/06/07/experts-revise-guidelines-for-determining-brain-death.html

 The new guides tell physicians to do a extensive evaluation of a patient, with a check list of about 25 tests that must be performed and specific criteria that must be met.

The new guidelines were co-written by Dr. Panayiotis Varelas, director of the Neuro-Intensive Care Service at the Henry Ford Hospital in Detroit.

The U.S. Uniform Determination of Death Act does define when death takes place: When a person permanently stops breathing; the heart stops beating; and all brain functions, including those in the stem, stop.

The problem is that doctors differently determine who meets those criteria.

A 2008 study that included 41 of the country’s top hospitals, done by Varelas, found a lot of variability in how doctors and hospitals judged who fit the criteria. 

 Under the revised guidelines, the three signs of brain death are coma with a known cause; abscence of brain stem reflexes and the permanent cessation of breathing.  

Being in a vegetative state does not equate to being brain dead, according to the new rules.

Brain death is caused by severe traumatic brain injury, stroke or oxygen deprivation following cardiac arrest.         

Army Preps Implants To Fix Damaged Brains Of Iraq, Afghanistan Vets

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Posted on 10th May 2010 by Gordon Johnson in Uncategorized

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With an estimated 10 to 20 percent of our troops coming home from Iraq and Afghanistan with traumatic brain injury, the U.S. Army is trying innovative treatments to help them, according to Wired magazine.  http://www.wired.com/dangerroom/2010/05/pentagon-turns-to-brain-implants-to-repair-damaged-minds/

The Pentagon will use brain implants, brain chips, that are meant to act as replacement parts for injured parts of the brain. 

Darpa, which Wired calls “the military extreme science agency,” is spearheading the project. The initiative is named REPAIR, which stands for Reorganization and Plasticity to Accelerate Injury Recovery. 

The project will initially get $14.9 million for its first two years, with the money going to four places, led by Stanford and Brown University.     

There have been great leaps made in terms of understanding brain injury, with scientists now able to create conceptual models of brain activity. Researchers can also track the electrical pulses emitted by brain neurons, and therefore they have gained insight into how neurons communicate.

The REPAIR team will use optogenetics, which entails using light particles to turn “brain circuits on and off,” according to Wired.

The implants that REPAIR is developing will be made of electrodes or optical fibers, and will be placed on the surface of the brain. These devices will “read” the electric signals from neurons, and then emit light impulses to stimulate other parts of the brain to respond.

So these implants are intended to take the place of brain areas that are damaged.

REPAIR, if it is successful, can help more than brain-damaged veterans. The technology can also be used on civilians. 

    

     

President Obama Signs Veterans Traumatic Brain Injury Bill

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Posted on 8th May 2010 by Gordon Johnson in Uncategorized

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Some say that ” the signature wound” of the wars in Iraq and Afghanistan is traumatic brain injury (TBI), and last Wednesday President Barack Obama took action to try to help veterans with that malady.

Obama signed legislation into law that is trying to improve the kind of care military veterans receive for TBI.  http://www.recordnet.com/apps/pbcs.dll/article?AID=/20100506/A_NEWS/5060332/-1/a_news05

The bipatisan law seeks to develop guidelines for better treatment and rehabilitation of veterans with TBI, in that it establishes a panel that will determine what kind of job the Veterans Administration is doing when it cares for veterans with brain injury.

 The panel will also make yearly recommendations for VA improvements and set up a TBI education and training program for VA professionals.

The bill was sponsored by Rep. Jerry McNerney, D-Pleasonton, who has been working on the legislation since he went  to Congress three years ago to represent California’s Stockton and San Joanquin County.

War-zone blasts, gunfire and shrapnel in Iraq and Afghanistan are driving up the number of brain injuries that soldiers are sustaining. In 2000, the number of those with TBI was 10,963. But back in December that number had more than doubled, jumping to 27,862, said the Defense and Veterans Brain Injury Center.  

 

 

Army Trauma Units Are ‘Worse Than Iraq,’ One Soldier Charges

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Posted on 26th April 2010 by Gordon Johnson in Uncategorized

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The Army’s Warrior Transition Battalion units, designed to treat soldiers with several physical and psychological trauma, “have become warehouses of despair,” leading to drug addiction, loneliness and suicide, The New York Times charged Sunday. http://www.nytimes.com/2010/04/25/health/25warrior.html?ref=todayspaper

 It’s a rather horrifying story. It appears that some of the men and women who served this country in Iraq and Afghanistan, and suffered for it, are being locked away to cope with their headaches, depression and nightmares from combat.

 Not only are these servicemen not being given psychological help, according to The Times, they are being harangued by the noncommissioned officers who watch over them. The bullies accuse the war-ravaged vets of exaggerating their problems, and sometimes unfairly discipline them for minor infractions, The Times says.

 The paper quotes one veteran of the war in Iraq, Michael Crawford, saying that being in one of the transition units “is worse than being in Iraq.”

There are 7,200 soldiers in 32 transition units around the country.

The soldiers in these units are often prescribed drugs, and become addicted to them or move onto heroin, which according to The Times is easy to find on bases. These soldiers become listless from the drug use, and find it hard to exercise or take the classes they’re supposed to take. Then, they are punished by their noncom leaders.

What does this kind of caretaking lead to? At the Fort Carson transition unit, four soldiers have committed suicide.

The special units were designed to give combat veterans individual, specialized care, especially with their mental wounds. The wars in Iraq and Afghanistan have subjected many troops to concussions, leading to mental and behavioral problems.

Instead, The Times claims, these wounded soldiers are being made to feel “like fakers or weaklings.”

In one instance, a soldier who was diagnosed with post-traumatic stress syndrome and traumatic brain injury was assigned 24-hour guard duty against the orders of his physician, That man experienced flashbacks to his tour in Iraq.

 All in all, the story is an illuminating look at these transition units, and whether or not they are a failure.

Husband Of TBI Survivor Shares Blog On Her Miraculous Recovery

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Posted on 15th April 2010 by Gordon Johnson in Uncategorized

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Believe in miracles – no matter what the doctors tell you.

 That’s the message from George. The Canadian resident asked that we share his family’s story and blog with you, to give hope to those who feel hopeless after their loved one sustains a traumatic brain injury.

 “My wife Yvonne was involved in a head-on collision with a tractor trailer in late January 2010,” George wrote us. “The car spun out on icy roads and crossed the line. Initially the doctors didn’t give us much hope. They said she might never leave the ICU and they asked us if it was her wish to be an organ donor. Yea, pretty damned bleak.”

 Well, apparently the doctors were wrong about Yvonne.

“She is healing beautifully and she IS a miracle girl!” George said.

The family has been keeping a blog about Yvonne’s progress, http://yvonneonthemend.blogspot.com/.

“I just wanted to share this so other families who suddenly find themselves in this situation will be able to read about her,” George wrote. .

The blog’s first entries date back to a day or two after the accident, which took place Jan. 27.

Study To Research Impact of Progesterone on TBI Patients

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Posted on 12th February 2010 by Gordon Johnson in Uncategorized

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Ironically, despite a strong recommendation from the authors of the Guidelines for the Management of Severe Traumatic Brain Injury that the use of steroids was NOT recommended for the treatment of severe traumatic brain injury, research in the area continues. The irony is that the Brain Trauma Foundation is supporting such research, despite the fact that they were the publishers of the Guidelines. The Guidelines were published in Journal of Neurotrauma, Volume 24, Supplement 1, 2007. http://www.braintrauma.org/site/PageServer?pagename=Guidelines

The latest guideline said this about steroids:

The majority of available evidence indicates that steroids do not improve outcome or lower ICP in severe TBI. There is strong evidence that steroids are deleterious; thus their use is not recommended for TBI.

Currently there is little enthusiasm for re-examing the use of existing formulations of steroids for treatment of patients with TBI. If new compounds with different mechanisms of action are discovered, further study may be justified.

I guess a lot has changed in less than three years. A nationwide study, named ProTECT, on the use of progesterone to treat moderate to severe brain injury will be conducted at 17 hospitals across the nation, it was announced Wednesday.
http://www.henryfordhealth.org/body.cfm?id=46335&action;=detail&ref;=1057 Progesterone also known is a steroid hormone which is part of the female reproductive cycle.

The study, funded by the National Institute of Neurological Diseases and Stroke, will track 1,100 patients nationally for at least three years. http://www.freep.com/article/20100210/BUSINESS06/100210029/1320/Hospitals-take-part-in-brain-injury-study

The goal of the research is to find out if the hormone progesterone can lessen the disability and death, that can stem from Traumatic Brain Injury, the leading cause of death and disability in those younger than 44 years old, according to the Brain Trauma Foundation.

Research with animals has found that progesterone may lessen brain damage resulting from TBI.

ProTECT is a double-bind study, and will evaluate patients with moderate to severe brain damage. The evaluation must take place within four hours of the injury, and enrolled patients will either be given a placebo or the progesterone intravenously.

The Food and Drug Administration is allowing hospitals to enroll patients without written consent because TBI patients may not be conscious or have the ability to make an informed decision right after their injury.

Four Detroit hospitals will take part in the study, namely Henry Ford Hospital, Detroit-Receiving Hospital, Sinai-Grace Hospital and Beaumont Hospital.

One of the last studies on the use of steroids for TBI was halted mid-trial because of hard evidence that it was doing more harm than good. We hope this one is monitored with extremely tight controls, with no vested stake in continuing the study if things start to go wrong.

Richardson death revives debate on ski helmets

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Posted on 20th March 2009 by Gordon Johnson in Uncategorized

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Date: 3/19/2009 11:14 PM

By MEGAN K. SCOTT
Associated Press Writer

NEW YORK (AP) — News that actress Natasha Richardson died of head injuries after falling on a ski slope has renewed debate over whether helmets should be mandatory for snowboarders and downhill skiers.

The 45-year-old actress was not wearing a helmet when she fell Monday at Mont Tremblant ski resort in Quebec. She died Wednesday in a New York hospital.

It’s unclear whether a helmet could have saved Richardson. But research shows wearing a helmet decreases the likelihood of having a head injury by 40 to 60 percent, said Dr. Robert Williams, associate professor of anesthesia and pediatrics at Fletcher Allen Health Care in Burlington, Vermont.

“There’s no downside at all to wearing a helmet,” he said.

In the United States, the National Ski Areas Association is not aware of any states that mandate helmets. But the association and its member resorts promote their use, and a growing number of skiers and snowboarders choose to wear them.

According to the group, nearly half of U.S. skiers and snowboarders wore helmets in the past two years, up from about 25 percent five years earlier. Sales of helmets have grown at a rate of about 9 percent each year since 2005-2006, according to SnowSports Industries America.

Quebec officials said Thursday that they are considering making helmets mandatory on ski slopes following Richardson’s accident. Emergency room doctors had been lobbying for the requirement, and Richardson’s death added impetus to the plans, said Jean-Pascal Bernier, a spokesman for the sports minister.

“By no means will a helmet save you 100 percent but it’s definitely a step in the right direction to try to prevent brain damage or something like that,” said Valerie Powell of the Canada Safety Council.

But the National Ski Areas Association, based in Lakewood, Colorado, stops short of calling for legislation.

The increase in helmet usage has not reduced the overall number of ski fatalities; more than half of the people involved in fatal accidents last season were wearing helmets at the time of the incident, according to information gathered by the group.

And ski and snowboarding-related deaths are relatively rare. During the 2004-2005 season, 45 fatalities occurred out of the 56.9 million skier/snowboarder days reported for the season, according to NSAA.

Helmets may be effective at preventing minor injuries, but they have not been shown to reduce fatalities, said Jasper Shealy, a professor emeritus at the Rochester Institute of Technology who has been studying skiing and snowboarding since 1970.

He encourages people to wear helmets, although he suspects they may give people a false sense of security to engage in risky stunts. Helmets work better at slow speeds, he said, when they can protect against injuries caused by collisions with solid objects.

Ski operators are among the most vocal opponents to mandated helmet use.

Alexis Boyer of the Quebec Ski Areas Association said 90 percent of youngsters under 12 already use helmets, but making that law would put operators in the position of having to police their guests, many of whom come from outside the province and country and may not be aware of the requirements.

Still, people tend to change their behavior as a result of high-profile deaths.

Andrea Fereshteh, 29, a writer at Duke University, said she started wearing a helmet after the ski-related deaths of Sonny Bono and Michael Kennedy. Both crashed into trees.

“It just became much more publicized about the need for helmets,” she said.

Richardson’s death is likely to hit home for skiers because she was on a beginner slope when she fell. Resort officials say she seemed fine immediately afterward and even refused to see a doctor but that she began complaining of a headache about an hour later and was rushed to hospital.

Scott Kerschbaumer, a former ski instructor who has never worn a helmet, considered Bono’s and Kennedy’s skiing deaths to be the result of high-speed, somewhat reckless behavior.

Richardson shows “that the most serious of injuries and even death can result from the most innocuous of falls while skiing.”

Kerschbaumer said he hadn’t wanted to wear a helmet because of vanity and comfort, but will now purchase one for himself and his 6-year-old son.

As a beginner skier, Latoicha Phillips Givens, 35, an attorney in Atlanta, thought she was safe skiing without one. She said she certainly is going to wear one now.

But Bill Douglass, 37, a social media strategist in New York City, said he doesn’t want to see people overreact.

“I think wearing a helmet when skiing is going too far,” he said. “Better to encourage people to focus on smarter safety measures like taking classes, learning how to stop properly, that kind of thing.”

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Associated Press Writer Rob Gillies in Toronto contributed to this report.

Copyright 2009 The Associated Press.
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