Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

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Stress of surgery hard on the heart

February 8, 1999 by Judy Foreman

Dorothy Teixeira, a 76-year-old Peabody woman who had a history of chest pains, got even more bad news last summer: She had colon cancer and needed surgery.

In many hospitals, Teixeira would have been taken off her heart medications during and after surgery because of the fear that the drugs – called beta-blockers – might make her heart too sluggish.

But her doctor at Beverly Hospital, Dr. Lawrence Shinbaum, is one of a growing number of anesthesiologists who feel that not only should patients like Teixeira not be taken off beta-blockers, but that many others should be put on the drugs just before and for a week or so after surgery to reduce the risk of cardiac complications.

The issue can be a matter of life and death – but it’s hotly controversial as well.

Two years ago, Dr. Dennis T. Mangano, an anesthesiologist at the VA Medical Center in San Francisco, published a study of 200 patients who had heart disease or were at risk of it and were having noncardiac surgery. He found that atenolol, a beta-blocker, reduced the overall risk of death by 55 percent and the risk of death specifically from cardiac causes by 65 percent. The benefit was most pronounced in the six months after surgery, but persisted for two years.

“We were surprised,” says Mangano. It’s “very exciting.”

Given that 30 million Americans a year have noncardiac surgery and 3 million of them are at high risk for heart disease, wider use of atenolol – and presumably, other beta-blockers – could prevent thousands of deaths a year, he argues.

The problem is that, aside from some supporting research, Mangano’s study is the main evidence that would cause doctors to use beta-blockers more widely for this purpose, and many say that’s just not enough information to act on.

Mangano’s data “are suggestive because it’s such a well-done study, but it is still a relatively small study,” says Dr. Edward Lowenstein, a cardiac anesthesiologist at Massachusetts General Hospital.

Worse yet, it’s unlikely that much more data will be forthcoming, because many beta-blockers are now sold as generic drugs, and manufacturers have little incentive to fund the larger studies that could settle the issue.

That means doctors have to go with their guts on this one, and their guts are telling them vastly different things.

The nay-sayers stress that beta-blockers carry some risks – notably they can exacerbate asthma and suppress heart beat and blood pressure, especially in patients who have failing hearts.

Dr. Lee Fleisher, an anesthesiologist at Johns Hopkins Medical Institutes in Baltimore, for instance, agrees that heart function should be closely monitored and controlled during and after surgery. But he argues there’s too little data to recommend that beta-blockers be used more routinely in surgery.

Dr. Thomas Graboys, director of the Lown Cardiovascular Center at Boston’s Brigham and Women’s Hospital, puts it more bluntly. If a person is at risk for heart disease, he “should be on beta-blockers whether he’s having surgery or not,” he says. But giving beta-blockers routinely to surgical patients is risky because of the chance that the drugs might overly suppress heart rate and blood pressure.

On the other side, beta-blockers in general “are safe and have been administered . . .to hundreds of thousands of people,” argues Dr. Peter Rock, an anesthesiologist at Washington University in St. Louis, who advocates wider use of the drugs for surgical patients.

The American College of Physicians agrees. In 1997, it recommended that all surgical patients with heart disease or at risk for it take beta-blockers around the time of surgery, unless there is a strong reason not to.

Last year, the journal Anesthesiology threw its weight behind beta-blockers, too, in an editorial that concluded that “the majority of patients with risk factors for coronary artery disease should be treated with at least some type of [ beta] -blocker” at the time of surgery.

The reason is that surgery is a huge stress on the body.

 “Having an operation triggers a cascade of stress hormones,” including adrenalin, which makes the heart beat more strongly and rapidly, says Dr. Daniel Carr, vice chair for anesthesia research at the New England Medical Center. “Even if the person is unaware that his body is being operated upon because of general anesthesia, these primal reflexes are still present.”

And the stress from surgery, particularly on the heart, continues after a patient wakes up. “It’s like being on an exercise treadmill for five days,” says Mangano, “even when pain, a notorious stressor, is well-controlled.”

In fact, peak heart attack risk comes three days after surgery, says Dr. James B. Froehlich, co-director of vascular medicine at the University of Michigan Medical Center in Ann Arbor. That’s when fluids that have leaked from blood vessels into injured tissues seep back into circulation, increasing the workload of the heart.

The adrenalin surge that occurs during surgery also has a lingering effect on platelets, which become stickier and more likely to form clots that can clog coronary arteries. Surgical stress also causes the fatty plaque that lines artery walls to become unstable, which means that the pieces of the plaque can break off and block coronary arteries, even months later.

All of this has persuaded many doctors to lean toward wider use of beta-blockers for surgical patients with heart disease risk. “Even if the effect is half of what Mangano found, it’s still unbelievable,” says Shinbaum, the Beverly anesthesiologist.

Mangano puts it bluntly: “If we demand further studies, it will take three more years, during which time hundreds of thousands of patients will be deprived of an outstanding therapy and might die.”

Dorothy Teixeira isn’t about to argue with that. She had no heart problems during or after her colon surgery, she says. And despite having chemotherapy for her cancer, she says, “I went out New Year’s Eve. I’m doing pretty good, considering.”

What to ask the doctor

Things to talk to ask your doctor about if you have heart disease, or are at risk of it, and are facing noncardiac surgery:

  • Make sure everyone on your team – your internist, your surgeon and your anesthesiologist – know about your heart disease risk and all medications you are taking.

  • Ask how the stress of surgery may affect your heart and whether the risks of surgery outweigh this risk.

  • If you’re already on beta-blockers and any doctor on your team suggests stopping them around the time of surgery, ask why. – If you’re not on beta-blockers, ask if you should be and whether you should start before and continue after surgery.

  • Before you’re discharged, ask how well your heart tolerated the surgery and whether you should take beta-blockers at home.

For more information on the arguments for using beta blockers, you may call the Safe Surgery Hotline, 1-800-700-2617 begin_of_the_skype_highlighting              1-800-700-2617      end_of_the_skype_highlighting, organized by Dr. Dennis T. Mangano at the Ischemia Research and Education Foundation in San Francisco. There is believed to be no comparable site on the other side of the controversy.

Antibiotics: Knowing when to say no

February 1, 1999 by Judy Foreman

You’ve had a cold for days now. You’re sneezing. Your throat hurts. Your nose is stuffy. You’re coughing. And you’re just plain sick of being sick. Is it time to see a doctor?

Or, your kid has been in earache hell all winter. She’s just finished a course of antibiotics, but she still has fluid behind her eardrum. Should she take even more antibiotics?

Or, your face hurts. Your sinuses ache. Even your upper teeth are in agony. Yellow-green gunk is pouring out of your nose. Is this just a bad cold or something worse? Do you need antibiotics?

It’s that awful time of year, when colds, flu, allergies, sinusitis, and ear infections not only plague but perplex. How do you know which misery you’ve got? How do you know which symptoms to tolerate and which to treat? Most urgently, how do you know when you really need antibiotics?

It is a crucial question. Antibiotics are life-saving in some situations, but ineffective in others – worse than ineffective, because the more widely antibiotics are used, the more bacteria around the world become resistant to them, ultimately rendering the drugs useless.

Cancer drugs, by contrast, affect only the person who takes them. But an antibiotic affects not just your health but potentially that of everyone in the world, notes Dr. Stuart B. Levy of the Tufts University School of Medicine, who heads the Center for Adaptation Genetics and Drug Resistance.

When you take an antibiotic, it kills off some of the hundreds of strains of bacteria in your body, wiping out those that are sensitive to it but leaving those that are not, says Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases in Bethesda, Md.

“The few resistant ones that are already there will then repopulate, so you have replaced sensitive ones with resistant ones,” Fauci says. That means you now harbor more dangerous bacteria that could make you sick in the future, and next time, when you need antibiotics, the drugs may not work. It also means you can now spread more resistant bacteria to other people.

In addition to the possibility of being infected by resistant strains from someone else, you develop your own. Bacteria are always dividing, and as they do, they sometimes mutate. Some mutants by chance will be resistant.

Already, several deadly strains of bacteria are so resistant they evade every antibiotic available – more than 100 drugs, says Levy of Tufts medical school. And while some of this problem may be due to widespread use of antibiotics in cattle feed, much of it is because people take antibiotics when they don’t need to. The Centers for Disease Control and Prevention estimates that 50 million of the 150 million outpatient antibiotic prescriptions a year are unnecessary.

So, when do you really need them?:

  • Sore throat. The only time antibiotics are appropriate is for strep throat, caused by the Streptococcus bacterium, says Dr. Richard Besser, a pediatrician and epidemiologist at the CDC. To know whether you have strep, you need a throat culture, which can take several days, or a five-minute “rapid test,” though some insurers won’t pay for the latter. But most sore throats are viral, not bacterial, and antibiotics do not work against viruses. If you have a runny nose and cough along with your sore throat, chances are you have a virus, not strep.
  • Sinus infections and colds. Every year, Americans suffer a billion colds; kids average six to 10 a year, adults two to four, government figures show. Since colds are caused by viruses (more than 200 different ones, in fact), antibiotics won’t help. But colds can lead to secondary bacterial infections in the sinuses.

There’s no easy test to tell a cold from sinusitis, but there are clues.

Colds usually last less than 10 days; sinus infections, more than 10. With a cold, the nasal discharge is thick and whitish or thin and watery; with a sinus infection, the discharge is likely to be thick and yellow-green and you may have a fever. (The CDC, however, notes that sometimes even yellow-green mucus can be caused by a viral, not bacterial, infection.)

Other signs of sinus infection include a feeling of facial pressure, fatigue, and tooth pain, says Dr. Marvin Fried, chief of otolaryngology at Beth Israel Deaconess Medical Center and Brigham and Women’s Hospital.

If you do have a sinus infection, it’s probably bacterial, and you need antibiotics, says Dr. Ralph Metson, an ear, nose, and throat surgeon at the Massachusetts Eye and Ear Infirmary. And if you have repeated bouts that don’t respond to antibiotics – more than three a year – you may need surgery to enlarge sinuses that have become blocked by allergies, colds, or polyps.

  • Coughs. In children, most coughs, and even bronchitis (inflammation of the bronchial tubes), are viral and don’t warrant antibiotics, says Besser of the CDC. In adults, especially smokers, bronchitis may be bacterial and need antibiotics. At any age, if your cough is prolonged or you’re very sick, you should see a doctor because you may have pneumonia. Since pneumonia is often caused by bacteria, antibiotics are warranted.
  • Earaches. More antibiotics are prescribed for kids’ ear infections than for anything else, the American Academy of Pediatrics says, and many are unneeded. In fact, about 50 percent of the bacteria that most commonly cause ear infections are now believed to be resistant to antibiotics.

The problem is that there are two types of earaches, and only one warrants antibiotics. That one is acute otitis media, which causes pain, fever, inflammation, and pus that’s often visible behind the eardrum.

The other, otitis media with effusion, often follows the acute form, even after antibiotics, and can last for months. While there’s also fluid behind the eardrum in this condition, the fluid is clear and there’s usually no pain. Antibiotics aren’t usually needed.

In fact, if doctors differentiated between these two types of earaches and held back more often on antibiotics for otitis media with effusion, 8 million unnecessary courses of antibiotics could be avoided every year. But day-care centers often won’t re-admit kids who’ve been sick unless they kids are on antibiotics. One solution to that, the CDC says, is for doctors to write a note to the child’s day-care center explaining why antibiotics are not needed.

  • Flu (influenza). People often confuse colds and flu, but the symptoms are different. With flu, there’s usually a fever, a prominent headache, and exhaustion. If you’re not sure what you have, see your doctor, and ask to be tested. There are now more than a half-dozen rapid diagnostic tests for flu, according to the US Food and Drug Administration. If you do have the flu, two drugs, amantadine and rimantadine, can reduce symptoms.

Regardless of which form of respiratory misery you’ve got, remember that “the body’s immune system cures most infections, whether they’re caused by bacteria or viruses. Otherwise, the human species would not have survived, even before the advent of antibiotics,” says Metson of Mass. Eye and Ear.

“Nevertheless, if you think your infection is severe, see your doctor. Antibiotics can relieve symptoms and can be lifesaving.”

As bacteria fight back, world health woes are feared

In the 1940s, when antibiotics were developed, they were seen, rightly, as miracle drugs. Indeed, the ability to save lives by killing deadly bacteria is a milestone of modern medicine.

But now, 50 years later, these drugs have been used so often – and often, so unnecessarily – that bacteria are becoming resistant, creating a potentially disastrous health problem.

Already, the death rates from some diseases, such as tuberculosis, are rising again after having decreased for decades, says Dr. Stuart B. Levy at Tufts University School of Medicine.

Bacteria can become resistant to antibiotics in several ways. They can spontaneously undergo mutations that allow them to evade antibiotics. They can also acquire “resistance genes” by swapping DNA with other bacteria.

And in any given body or community, strains of bacteria that are resistant can become dominant if antibiotics kill off other bacteria with which they compete.

Researchers have found, for instance, that when one member of a household chronically takes an antibiotic for acne, other members develop skin bacteria resistant to that antibiotic.

More alarmingly, in many parts of the world, strains of the deadly Staphylococcus aureus are now resistant to all antibiotics except the potent vancomycin. And many strains of “staph,” a major cause of hospital-acquired infections, are becoming resistant to vancomycin as well, says Levy.

This means that strains of bacteria “untreatable by every known antibiotic are on their way,” he adds.

Worldwide, part of the problem is that farmers use antibiotics to boost growth in animals, Levy adds. Long-term exposure to low doses of antibiotics means animals may harbor resistant bacteria that can be passed to people. So far, the World Health Organization says, there is “little documented impact of this resistance on human health,” but the potential for harm is there and more data are needed.

You can help yourself – and the rest of society – by not pressuring doctors for antibiotics for viral infections. The drugs won’t work against viruses.

You should also take all the pills in any course of antibiotics you’ve been prescribed, for several reasons. If you don’t, you may leave alive bacteria that are less susceptible and most likely to become resistant. These bacteria may also make you relapse . And you might be tempted to use leftover antibiotics for some disease for which they’re not appropriate.

You should also avoid antibacterial soaps, hand lotions, and disinfectants, says Levy. There’s no evidence they ward off infection and they may contribute to antibiotic resistance.

Doctors and nurses can help by washing their hands – with regular soap – after every patient they see. Many don’t. And they should resist patient pressure for antibiotics if they’re unneeded.

For more information, you might want to read:

  • “The Antibiotic Paradox: How Miracle Drugs Are Destroying the Miracle,” by Dr. Stuart B. Levy, Plenum Publishers, 1992.
  • “Drug Resistance: The New Apocalypse,” special issue of Trends in Microbiology, Vol.2, No. 10, October 1, 1994.
  • “Antibiotic Resistance: Origins, Evolution, Selection and Spread,” edited by D. J. Chadwick and J. Goode, John Wiley & Sons, 1997.
  • “The Challenge of Antibiotic Resistance,” by Dr. Stuart B. Levy, Scientific American, March, 1998.
  • On the Web, you can also check out www.antibiotic.org, the site for the Alliance for the Prudent Use of Antibiotics.

New clues, therapies aid stutterers

January 25, 1999 by Judy Foreman

As a child, Louise Kennedy stuttered so badly that eventually she just stopped talking.

Now a 37-year-old administrator at Harvard’s John F. Kennedy School of Government, Kennedy recalls that the other kids in Dundee, Scotland, where she grew up, were merciless. One rode by on his bike yelling, “Stutterer, stutterer.” Others “tied me up and put me in a rubbish bin.”

Her father was even worse. “He refused to believe there was something wrong,” even as she dropped more and more words from her vocabulary, including, not surprisingly, “Daddy.”

“I’d say D-d-d-d,” she remembers. “He’d say, ‘Spit it out, girl.’ “

She just plain couldn’t.

Stuttering is a defect in which the flow of speech is broken up abnormally. Sometimes there’s no sound at all. Sometimes the stutterer repeats the beginning of a word, like st-st-stuttering. Sometimes there’s a prolongation of sounds, like ssssssstuttering. Sometimes the stutterer tries so hard to get words out he clenches his fist or starts developing facial tics.

For the 3 million Americans who stutter – and sometimes for those who listen – stuttering can be torture, partly because of sheer frustration but also because many people assume that someone who stutters must be dumb or emotionally disturbed.

Wrong. Scientists still don’t know exactly what causes stuttering, but they’re convinced it’s not nervousness or emotional problems, though stuttering can lead to both. But while the root causes remain elusive, researchers have developed increasingly refined therapies and uncovered important clues to the underlying biology of stuttering. For instance:

  • Stuttering runs in families. If you have a parent, sibling or child who stutters, you are 5 to 20 times more likely to stutter than someone who has no such history – a clear sign that genes play a role, says geneticist Dennis Drayna of the National Institutes of Health.
  • If one identical twin stutters, there’s a 25 to 80 percent chance the other will, too – another sign that genes are involved.
  • If a child with biological parents who speak normally is adopted by a parent who stutters, there is no increased risk the child will stutter, according to a study of Colorado adoption records. This shows stuttering is not learned behavior, says the author, Susan Felsenfeld, a communication disorders specialist at Duquesne University.
  • Brain imaging studies suggest the brains of people who stutter are different from those of people who don’t, says Dr. Anne Foundas, a behavioral neurologist at Tulane University School of Medicine.

In fact, Broca’s area – crucial for producing speech – is in the left hemisphere in most people. But stutterers often use the right hemisphere to produce speech, says speech-language pathologist Barry Guitar at the University of Vermont.

One reason stutterers may have trouble is that the right hemisphere processes nerve signals more slowly than the left. Since speech is being generated in the “wrong” place, the pathways that nerve signals must travel to produce it – from the brain to muscles in the mouth, tongue, lips and larynx – may be more convoluted than normal. Stuttering then could be the result of a timing or coordination glitch in these signals.

Even stutterers don’t always stutter. If they whisper or speak very slowly, for instance, some may speak fine. They may also be fluent if they wear earphones that delay the sound of their own speech, a device that can actually disrupt the speech of people who don’t stutter, says psychologist Ron Webster, director of the Hollins Communications Research Institute in Roanoke, Va. This suggests that feedback – hearing your own speech – is a key part of speech production.

Perhaps most intriguing, males stutter at four times the rate of females. Researchers don’t know why that is either, but stuttering usually starts in childhood, and some think female brains may be better able to rewire bad connections.

Recently, scientists have been trying a number of drug treatments for stuttering, including medications normally used for Parkinson’s disease or psychosis, on the theory that stutterers may have an abnormality in certain brain chemicals. Others have tried injecting botulism toxin into the vocal folds to stop muscle spasms that can disrupt speech.

So far, none of these approaches is a “magic cure,” says Charles Diggs, a speech-language pathologist at the American Speech-Language-Hearing Association in Rockville, Md.

What can work are techniques called fluency shaping and stuttering modification, which are sometimes taught together.

Fluency training, like that taught at Hollins, involves having the stutterer slow his speech down to the glacial speed of two seconds per syllable. Therapists then painstakingly teach the stutterer how to form each of the 35 sounds in English correctly, and how to coordinate breathing and speaking better.

After 19 intense days – and $3,200 – many people he has treated, including Louise Kennedy and Annie Glenn, the astronaut’s wife, emerge speaking far more fluently, says psychologist Webster.

The other approach involves teaching stutterers not to feel so anxious about stuttering and to “shape the stutter” so that they are in control of it, and not vice versa. This involves slowing down the part of the word that’s problematic and not struggling with the sound.

Jane Fraser, president of the Stuttering Foundation of America, says this worked for her father, who started the group in 1947. He taught himself to say his last name slowly, FFFFuuuhhhraser, to get the initial sound out.

What doesn’t work, say speech pathologists like Laura Barrett at the Franciscan Children’s Hospital and Rehabilitation Center in Brighton, is to substitute easy words for tough ones. The list of taboo words just grows.

It also helps to remember that many stutterers triumph over the disorder, including Winston Churchill, who become a great orator. But for many stutterers, just being able to speak normally is reward enough.

Not long ago, Louise Kennedy invited her boyfriend to have lunch with her father, who was visiting from Asia. Kennedy’s boyfriend raved about the progress she’d made, adding that he knew she’d had a bad problem when she was a child.

“Oh, it was just all in her mind,” Kennedy recalls her father saying, adding that she thinks now he was “afraid of not being able to fix it.” And that’s true, he couldn’t.

But she did. “I found my voice,” at Hollins. “The world is now my oyster.”

When you talk to a stutterer

  • Be calm and patient. Maintain eye contact and pay attention to what the person is saying, not how he’s saying it.
  • Don’t interrupt or finish the person’s sentence.
  • Some speech fluency problems are normal in children, especially in chilren under 4. In older children or any child with severe or persistent problems, consult a speech-language pathologist.
  • To help a child who stutters, provide opportunities for him to talk to you without distraction or competition from others.
  • Don’t ask a child a lot of questions at once. Give your child time to answer one question before you ask another.
  • Don’t tell the child – or any stutterer – to relax or slow down. This won’t help and calls attention to the stuttering.
  • Be extra patient if you are talking to a stutterer on the telephone – this is a high stress situation.
  • Remember that the stutterer is not doing this on purpose. Be kind – that’s what you’d want if you were the stutterer.

For more information, you may contact:

  • The American Speech-Language-Hearing Association, 1-800-638-8255 or on line at www.asha.org. The group offers referrals to speech therapists anywhere in the country.
  • The Stuttering Foundation of America can provide information and referrals, 1-800-992-9392 or on line at www.stuttersfa.org.
  • The National Stuttering Project runs self-help groups nationwide, 1-800-364-1677 or on line at www.nspstutter.org.

For teenager, ‘confidential’ is conditional

January 18, 1999 by Judy Foreman

Adolescence is hard enough, but when it comes to health care, teenagers are caught in a particularly delicate bind.

They’re old enough to face the same serious issues as adults — contraception, abortion, depression, alcohol or drug use — yet not old enough to have the same guarantees of confidentiality when they seek help.

Granted, confidentiality is not absolute for adults, either. If an adult poses a danger to himself or someone else, or is abusing or neglecting a child or a vulnerable adult, the doctor can, and often legally must, intervene.

But because adults can authorize their own care, and because they pay for it or have insurance that does, they have substantially more rights to confidentiality, at least in theory. Not so with teens.

In Wisconsin, teens can’t get any medical care care — except for evaluation of drug overdoses or in life-threatening emergencies — without prior written consent from a parent or guardian.

In most other states, a parent or guardian must authorize non-emergency care (not necessarily in writing), though teens can often be tested without parents knowing, and sometimes treated, for sexually transmitted diseases, including HIV infection, and for pregnancy diagnosis and contraception.

The degree of confidentiality a teenager has also depends on whether he or she is legally “emancipated” or “mature,” notes Richard Bourne, associate general counsel for Children’s Hospital in Boston.

In Massachusetts, for instance, a judge can decide that a teenaged girl is mature enough to make her own decision about abortion. In some cases, a doctor or other health care provider, rather than a judge, can decide that a teenager, male or female, is mature enough to consent to certain types of care.

But for many teenagers caught between childhood and adulthood, confidentiality can be elusive.

Teens often “go to a doctor for advice because they don’t want to ask their parents about something or don’t want to alarm their parents,” says Jeff Maranian, 17, an Arlington High School senior and member of an ongoing teen council convened by Tufts Health Plan to enlighten doctors on how teens want to be treated.

“Confidentiality is extremely important to teenagers,” he adds. He has no problem with doctors’ telling parents a teen is suicidal. But drug use?”No, that could be worked out between the doctor and patient.”Contraception? “I don’t think a parent needs to know about that.”

Indeed, with some issues like HIV, it may be “safer for the teen if the parent doesn’t know about the testing itself,” says Nicole Dray, a 16-year-old Lexington High School student who is also on the Tufts council.

“If they feel their parent will flip out about their having the test, they might not have it, which would be bad,” she says. “Some parents might think that if a teenager wanted the test, it means they are having sex with lots of partners or are using drugs. It might just mean they had sex once and want to be sure they’re okay.

“On the other hand, if they have the test and it’s positive, they obviously will have to tell their parents at some point.”

Several studies back up the notion that teens are more likely to confide in doctors if they know their concerns will be kept confidential, says Dr. S.Jean Emans, chief of the division of adolescent and young adult medicine at Children’s Hospital.

Ideally, pediatricians should raise the issue of confidentiality when the child is 10 or 11, says Dr. Michael McKenzie, assistant medical director for pediatrics at Tufts Health Plan.

“I do it in front of the parents. I say, `When you begin to see me by yourself — and that decision is up to the teen — that what we talk about is confidential.” He adds that if the teen threatens harm to himself or others, “that may be cause to talk to your parents against your wishes.”

And he forewarns: “If I hear something from you that I think your parents need to know and help you with, I will find a way to broker this, to help you talk to your parents about this.”

But it gets sticky, especially in “family practice,” where everybody in the family has the same doctor. Privacy can also get compromised in schools, where parents may have a right to see school records, including those of a school counselor. And there’s even less confidentiality for teens who are delinquent, in jail or on court probation.

Basically, medical and psychiatric care for adolescents boils down to a matter of “conditional confidentiality,” says Emans.

Part of the problem is that kids are caught in an “economic trap,” says clinical psychologist Gary Schoener, who specializes in ethical and legal issues and runs the Walk-In Counseling Center in Minneapolis.

Like battered women whose husbands pay the bills, teens may see their confidentiality shattered because parents either pay for their care or see insurance records.

What may work best is for the doctor to figure out, with the teenager, how to tell parents what’s going on or persuade parents to back off enough to give the teenager some privacy.

Sometimes, it helps to bring parents into the office, instead of just coaching the teen on how to talk to parents. Sometimes, it means persuading a teen to let parents know some things but not everything.

And in some cases, teens find it helpful to turn to the Internet with questions they might be afraid to ask a doctor in person, says Dr. Steven Adleman, medical director of substance abuse services at Harvard Vanguard Medical Associates in Boston. He runs a website, www.drsteve.org, which, he says, is increasingly being used by teens with questions about their use of alcohol, drugs and tobacco.

“I feel safer asking someone who can’t see me,” wrote one high school senior concerned about binge drinking. Another teen, an eighteen-year-old high school dropout who uses drugs, wrote, “This site is great for someone like me who is afraid to go to the doctor and afraid that my parents will find out I use drugs.”

But even with the best intentions, confidentiality can be jeopardized in situations that no one could have foreseen, says Thomas Grisso, a clinical psychologist and director of forensic training and research at the University of Massachusetts Medical School.

That can happen, for instance, when a teenager has been in psychotherapy for a while. Then the parents divorce, and a custody battle ensues. Sometimes, the court appoints a guardian to protect the teen’s interests. But the attorney for one side may subpoena the teenager’s therapist.

“Now you have the clinician stuck between his ethical obligation to maintain confidentiality to the child. . .and the legal order,” says Grisso.

The bottom line is not that you shouldn’t seek mental health or medical care when you need it. You should. But do so with your eyes open.

“Be neither blindly trusting nor blindly cynical,” advises Dr. Harold Bursztajn, who co-directs the program in psychiatry and the law at the Massachusetts Mental Health Center, a Harvard teaching hospital.

“If the doctor raises the question about getting in touch with your parents, go ahead and think of why or why not and talk about it,” he says. And if the answer is no, “say what you are afraid of, because there is something there that needs to be addressed, and it may not be in your mind.”


SIDEBAR

 How emancipation works

Teenagers may think that nothing sounds better than being emancipated from their parents but, legally, “emancipation” is a complicated and not always desirable state.

In general, however, teenagers have more rights to confidentiality if they are deemed “emancipated” or “mature,” though the definitions of these terms vary from state to state.

In Massachusetts, for instance, a teenager seeking an abortion has to get permission from a parent or guardian, or from a judge (which is called “judicial bypass”). In some states, parents must be notified, but getting their permission is not necessary. 

Once a judge deems a teenage girl to be a “mature minor,” she can make up her own mind about abortion. And sometimes, it doesn’t take a judge’s ruling to deem a teen mature — a doctor or other health care provider can make that decision

Emancipation also gets tricky.

By Massachusetts law, for instance, someone under 18 is emancipated if he or she is married, widowed or divorced; is a member of the armed forces; has a child; or lives independently from parents and is managing his or her own financial affairs (even if, as some interpret it, this means living on the streets and panhandling.)

If you’re an emancipated teenager, you can authorize your own care and therefore are entitled to more confidentiality.

In some states, including Massachusetts, you can also be emancipated under particular conditions, such as pregnancy or having a disease, including a sexually transmitted disease, that poses a risk to public health.

You can also be emancipated if you are 12 or older and are drug-dependent. The idea is to allow the teen to be assessed or treated without parents knowing, though doctors must tell parents if the condition poses a danger to life or limb.

Fat and Fit? – It’s possible but not ideal

January 11, 1999 by Judy Foreman

Susan Magocsi, a vivacious 50-year-old Milton psychologist, loves to exercise. She’s training for a walking marathon in Alaska in June. She lifts weights. She does yoga and ballet.

In fact, by a number of measures — such as low cholesterol and blood pressure — she’s admirably fit.

But she loves to eat, too. Eating is “embracing life,” she says cheerfully. “I’m always suspicious of people who don’t like to eat. Where is their spirit, their passion?”

That passion has helped her put on 30 pounds since high school, more than enough to double her risk of problems like diabetes and hypertension. Her body mass index, or BMI, is just shy of the new cutoffs the government uses to define overweight.

She couldn’t care less. “I’m fit and fat,” she says proudly.

Can you really be both fit and fat? Yes, at least some fitness-fatness gurus say, but it depends on how fit and how fat.

There’s no question that Americans today are fatter than ever, and fatter than the rest of the world, too. We’re also lazy: Nearly 80 percent of us don’t accumulate even the minimal exercise — 30 minutes daily — recommended by the government.

A whopping 55 percent of adults 20 and over — or 97 million Americans — are overweight or obese, according to guidelines released last year by the National Institutes of Health in Bethesda, Md. If you’re one of them, you have an increased risk of hypertension, high cholesterol, diabetes, heart disease, stroke, gallbladder problems, osteoarthritis, sleep apnea, and some cancers.

The guidelines, which conform to those of the World Health Organization, say you are overweight if you have a BMI of between 25 and 29.9, and obese if it is 30 or more. (To calculate your BMI, multiply your weight in pounds by 703, then divide the answer by your height in inches, twice — or in other words, by the square of your height.)

Overall, 21 percent of Americans are obese — compared to 14 percent of Canadians and 8 to 10 percent of people in other leading industrialized nations, says Claude Bouchard, a geneticist and obesity specialist at Laval University in Quebec.

But whether you can carry around a pile of extra pounds and still be fit if you exercise is “very controversial,” says Miriam Nelson, associate chief of the human physiology laboratory at the Research Center on Aging at Tufts University.

Bouchard, for instance, believes there is a “zone” in which you can be fit and fat. People with BMIs of 27 to 30, “which is becoming fairly chubby, can have fairly high degrees of fitness,” he says. Beyond that, while a few athletes can have a BMI in the obesity range and be fit, most ordinary mortals that size have too little muscle and too much body fat.

If you’re genuinely obese, weight loss is necessary to achieve optimal health, says Dr. JoAnn Manson an endocrinologist at Brigham and Women’s Hospital. In fact, a 1995 study of 170 obese men directly compared the benefits of weight loss without exercise to those of exercise without weight loss for reducing heart disease risk factors like high blood pressure, high cholesterol and diabetes. Weight loss won.

And last year, the American Heart Association added obesity to its list of major heart disease risks, along with smoking, high cholesterol, high blood pressure, and a sedentary lifestyle.

But other researchers flatly disagree, saying fitness may be more important than weight loss. The most persuasive evidence cited by this camp is an eight-year study of more than 25,000 men published in 1995 by Steven N. Blair, director of research at the Cooper Institute for Aerobic Research in Dallas.

Blair found, not surprisingly, that among men with a BMI of 27 or less, the moderately fit had half the risk of death from all causes as the unfit. The really fit were at even less risk.

But Blair’s team also found that even with a BMI of 27 to 30 and 30 or more, moderately fit and very fit men had lower death rates than unfit men. In fact, the Blair team believes that unfit thin men have a higher risk of death than fit but fat men.

“Although physical activity or exercise may not make all people lean, it appears that an active way of life may have important health benefits, even for those who remain overweight,” the team concluded.

Still, it’s “a rare bird who is both fit and fat,” argues Manson. “Fit and fat is clearly better than unfit and fat. But it’s not as healthy as fit and trim.”

To some degree, the relative merits of getting fit versus losing weight depend on what disease you’re trying to prevent.

Osteoporosis and colorectal cancer are more closely linked to a sedentary lifestyle than to obesity. Uterine and breast cancer in older women, on the other hand, are more tied to weight, because fat tissue makes estrogen, which drives these cancers.

For diabetes and high blood pressure, too, obesity is the big culprit. It leads to insulin resistance, which means the body becomes less responsive to the hormone insulin, which escorts sugar from the blood into cells. Insulin resistance leads to diabetes and salt retention, which raises blood pressure.

The bottom line for most people is that, after quitting smoking, “exercise is the single most important thing you can do to benefit your health,” says Manson. “Exercise increases muscle mass, which increases metabolic rate, even when you’re not exercising, which helps burn more calories.”

Generally speaking, of course, weight loss and fitness go hand in hand. But if you have to choose, she says, “focus on healthy lifestyle behaviors like regular exercise and a heart-healthy diet, not what the scale reads.”

Bouchard, the Quebec geneticist, agrees. Diet and exercise are both critical, he says, but if he had to pick just one, “I’d put my money on increasing the level of activity.

In fact, you’re better off eating 2,500 calories a day and working off the extra 500 than consuming just 2,000 and sitting around all day, says Nelson, the Tufts nutritionist.

Even physical activity as minor as fidgeting seems to help, Mayo Clinic researchers reported in last week’s Science journal. The clinic’s newsletter puts it this way: “Concentrate on being fit and healthy rather than squeezing into your old jeans.”

In other words, even small changes in activity make a big difference in fitness and weight over time. Decreasing energy output by 100 calories a day can lead to a gain of 10 pounds in a year. The reverse is also true: You can lose 10 pounds a year by adding a daily, one-mile walk, which burns 100 calories.

Obviously, you don’t have to choose between losing weight and getting fit. The two go together. But focusing on exercising can make things easier.

“For me to lose weight,” says Susan Magocsi, “I’d have to eat 1,200 calories a day. That’s not having fun. Let’s put fun in here.” For her, that means eating and exercising.



 Sidebar:

Losing it for keeps

In addition to body mass index, the National Institutes of Health recommends taking stock of your waist circumference, which is associated with abdominal fat. A waist measurement of more than 40 inches in men and 35 in women signifies increased health risk in people whose body mass index is between 25 and 34.9, meaning they are overweight or obese.

Though losing weight and keeping it off isn’t easy, behavior therapy to improve eating and exercise habits can help.

The NIH also says:

  • You should engage in moderate physical activity, progressing to 30 minutes or more on most, or preferably all, days of the week.
  • Cutting back on fat alone can help reduce calories and cardiovascular disease risk. But reducing dietary fat without reducing overall calorie intake won’t produce weight loss.
  • Even losing just 10 percent of body weight can reduce many obesity-related health risks.
  • If you’re trying to lose 10 percent of body weight, it’s likely to take six months, with a loss of one to two pounds a week.

For more information on the government’s weight guidelines and the body mass index chart, check the web, atwww.niddk.nih.gov

Promises and pitfalls of cyber medicine

January 4, 1999 by Judy Foreman

You feel sluggish, dizzy, distracted. In fact, you’ve been at work all morning and haven’t gotten a thing done. You e-mail your doctor, describing your misery in excruciating detail.

Your employer, quite legally, reads it, and concludes you’re not really sick, just goofing off. Now you’re in deep yogurt.

Or, you run out of Prozac. You e-mail your shrink, who calls in a prescription. You’re fine – until your employer gets sued for something unrelated and all company e-mail within certain dates, including yours, winds up in court.

Or how about this scenario? You seek a second opinion on line from a doctor you’ve never met. You explain the diagnosis from the first doctor. The on-line doctor recommends a different treatment. You do it. It makes you worse. You sue. You lose; turns out there was no real doctor-patient relationship.

In its own way, the Internet may be changing the practice of medicine as much as antibiotics, anesthesia or immunizations.

The wealth of health information – and misinformation – on line is unimaginably vast. There are 40 million Americans on line and 15,000 to 25,000 web sites for health matters, says Dr. Helga E. Rippen, a physician-engineer who runs a health information institute at Mitretek Systems, a nonprofit technology think tank in McLean, Va.

Nearly 40 percent of Americans with on-line access use the web to search for health information, a survey by Princeton Survey Research Associates and the Institute for the Future, a California think tank found.

Through the web, people find new medicines, needle-in-a-haystack experts and support. But they are also finding, or soon will, that cyber medicine has pitfalls as well as promise.

Like e-mail.

“This is a technology that, like it or not, we are all going to be using,” says Dr. Daniel Z. Sands of Beth Israel Deaconess Medical Center, a co-author of new guidelines on doctor-patient e-mail put out by the American Medical Informatics Association (www.amia.org).

Both patients and doctors tend to be naive about the dangers of medical e-mail. It’s inappropriate in emergencies, for instance – you should call your doctor or 911. In fact, it often takes 48 hours for a busy doctor to answer e-mail.

Confidentiality is another huge risk. E-mailing your doctor from work is dicey because your employer may see it. At home, especially if you share a computer with your spouse or kids, e-mail from your doctor may wind up on a screen everybody can see. In the doctor’s office, a nurse or others may be deputized to read e-mail – and put a copy in your patient record.

In between, in the vastness of cyberspace, your e-mail is vulnerable to busybodies hacking their way. So it’s wise to encrypt medical e-mail, which you can do through a number of “applications” (software) says Alissa Spielberg, a medical ethicist at Harvard Medical School.

Be careful if you fill out any medical forms on line, or otherwise divulge personal medical information, too. Make sure there’s a lock icon in the lower left corner, which means whoever has designed the form has included encryption, says Rippen.

Even with these precautions, be careful about discussing sensitive information such as psychiatric problems, HIV status, abortion decisions or disability claims on interactive web sites or by e-mail.

That said, doctor-patient e-mail is expected to grow because patients like the fact that e-mail helps them get through to doctors, bypassing secretaries, nurses, switchboards, and busy signals.

Doctors appear more reluctant. So far, only 1 to 2 percent use e-mail to communicate with patients, estimates Dr. Tom Ferguson, a health informatics professor at the University of Texas and editor of the Ferguson Report, an industry newsletter about on-line health information.

In part, this is because doctors fear that answering patients’ e-mail will take them time and pay nothing.

That’s true, but even so, it may be worth it, some say.

In a study published in October in the Journal of the American Medical Association, Dr. Stephen M. Borowitz, a pediatric gastroenterologist at the University of Virginia Health Sciences Center in Charlottesville, analyzed more than 1,200 e-mails from worried parents over a three-year period.

He found that it takes only four minutes, on average, to read and respond to an e-mail and that most can be answered within 48 hours. Parents also seem to feel freer on e-mail to ask questions they fear are “too basic or too stupid” to ask in person, he adds. To help with just such basics, he’s developed a number of online “tutorials” to which he directs parents with sick kids.

To help doctors cope with the inevitable growth of patient e-mail, Dr. David Stern, an internist at the Ann Arbor Veterans Affairs Medical Center and the University of Michigan Health System, is studying more than 50 young doctors.

Half of them will communicate with patients only in traditional ways, and half will add e-mail to their interactions, and he’ll compare the outcomes. The results aren’t in yet, he says, but he hopes to find out whether e-mail helps or hurts overall communication with patients and whether it saves or costs time.

And what about getting medical advice from on-line docs?

So far, there are about 10 on-line medical consult services. But while there are benefits to such cyber consults – such as getting detailed opinions about a proposed treatment plan – there are also questions:

Can you get personalized care from a doctor you’ve never met? How do you know your consultant is really a doctor? Does an on-line consult constitute a doctor-patient relationship? Can doctors, licensed state by state, practice on line across state lines? Do cyber doctors increase their risk of malpractice?

“People should be very cautious,” says Bill Silberg, new-media editor at JAMA. Even if you hook up with top authorities, it’s not clear the advice would be as tailored to you as what you’d get from your own physician. “That personal connection in extremely important, but this is an evolving field,” Silberg adds.

“I’d be quite wary,” adds Spielberg of Harvard. Despite doctors’ disclaimers, she notes, “Once money is exchanged, you’d have a good argument that a doctor-patient relationship exists. If harm occurs, you may have a claim for malpractice.”

Dr. James Winn, executive vice president of the Texas-based Federation of State Medical Boards, agrees, adding that his group has written model legislation – adopted by a dozen states – stipulating that when the patient and doctor are in different states, the patient’s jurisdiction should prevail.

The group also recommends that states issue a limited license to doctors from other states who offer electronic consultations.

Massachusetts has not adopted the model law, but is working on the issue, says Alexander Fleming, executive director of the state board of registration in medicine.

At Mediconsult.com, which offers consults from doctors in various states through a service called MediXperts, medical director Michel Bazinet and his staff say they have taken great pains to tiptoe through this legal minefield.

They say their services – $195 per consult – do not constitute a doctor-patient relationship or second opinion because the doctor never knows the patient’s name, only the case number. The patient also pays the service, not the doctor. The company insists that it does “not practice medicine with this service.”

Maybe. But the bottom line is that cyber medicine – whether e-mail, health-oriented web sites or on-line consults – is such an exploding field that lawyers, legislators and ethicists, let alone average patients, aren’t keeping up.

Which means: Think before you type.

Cyber tips for patients and doctors

For patients:

  1. Don’t use e-mail for emergencies or other situations in which you need a timely response. Call your doctor or 911.
  2. Don’t assume e-mail is confidential. Don’t discuss psychiatric problems, HIV status, abortion, disability claims or other sensitive issues by e-mail.
  3. Double-check the e-mail address you’re sending to.
  4. Identify yourself by name in the subject line. Don’t expect the doctor to decipher a cutesy e-mail address.
  5. Assume that whatever you write to your own doctor will end up in your medical record. Keep copies of all medical e-mail.
  6. If you e-mail your doctor from your workplace, know that your employer is legally entitled to read it.
  7. If you e-mail your doctor from home and you share your computer with family members, be aware that your e-mail may be read by others.
  8. Encrypt your medical e-mail.
  9. If you fill out forms on line with personal medical information, make sure the web site encrypts this information.
  10. Ask if the doctor will send your e-mails to insurers.
  11. Getting second opinions or other medical consults on line may be helpful, but use caution about taking medical advice from a doctor you have never met.

Clues, but still no cure for Autism

December 28, 1998 by Judy Foreman

Parker Beck, now 5, seemed normal when he was born, say his parents, Victoria and Gary Beck of New Hampshire, who run an educational-products business out of their home. He grew, learned a few words, did all the usual “toddler things.”

Then, at 15 months, he suddenly stopped speaking. He developed chronic diarrhea. Most bizarrely, he began spinning in circles.

He had brain scans, allergy assessments, blood work. The Becks suspected autism, a disorder once deemed rare but now known to be common, affecting 1 to 2 in every 1,000 people.

But first they needed to rule out a digestive disorder, because of the diarrhea. So Parker had an endoscopy, a test for which he was given Secretin, a drug approved to help diagnose pancreatic cancer.

Afterward, he began speaking again and had “incredible leaps of development,” says his mom, whose scientific sleuthing — all done on her own — rivals that in the film, “Lorenzo”s Oil,” the 1992 film in which parents search for a treatment for a son with a rare genetic disease.

Was it the Secretin that helped Parker Beck? The Becks began begging researchers to find out. They spread the word to other parents, read medical books, and even wrote a book.

Soon, the Internet crackled with questions from parents, like Eileen and Sean Martin of Salisbury, who are 31 and spend five hours a day on line seeking help for their two autistic children.

Recently, after a story about Secretin aired on national TV, the Becks got 800 calls in two days and thousands of letters.

“I can’t answer them,” Victoria says. “I’m a regular mom with two kids.”

But she’s also at the center of a maelstrom in the desperate world of autism.

Years ago, autism — a developmental disorder characterized by language problems, social withdrawal, learning disabilities and repetitive behavior — was presumed to be caused by bad mothering.

Now, researchers think the disorder — which affects 400,000 Americans, four times as many males as females — may be linked to a complex array of problems, including defects in anywhere from two to seven genes, environmental factors like viruses, exposure to chemicals or vaccines, an autoimmune abnormality or some combination of these.

Some children develop a type of autism if they get an extra piece of chromosome 15 from their mothers, but not an extra piece from their fathers, says Dr. Edwin Cook, director of developmental neuroscience at the University of Chicago.

Autistic children are not retarded; in fact, autism can strike people of normal or high intelligence, says Marie Bristol-Power, a specialist at the National Institute of Child Health and Human Development in Bethesda, Md.

It affects several areas of the brain, including the cerebellum, which helps maintain attention; the amygdala, which is important for memory and emotions; and the hippocampus, a crucial component in memory.

Though some children aren’t diagnosed until age three — and some, like Parker Beck, develop language and other skills only to lose them — autopsy studies suggest the initial damage may occur before birth, before the 30th week of pregnancy, possibly preventing key brain areas from maturing normally.

Even babies who appear normal at birth may not be, say researchers who’ve looked at videotapes of first-birthday parties of kids later diagnosed with autism and found subtle clues that others missed — poor eye contact, or a child not reaching to be picked up or not recognizing a family member.

Those who think a virus is the cause note that years ago, before vaccines dramatically reduced the incidence of rubella (German measles), autism rates were high among children born to women who had rubella during pregnancy.

But some people blame the vaccines themselves. Parker Beck’s cognitive skills regressed soon after his immunization at 15 months against measles, mumps and rubella, his mother says.

So far, there’s “no strong scientific evidence that would cause you to say there’s a link” between autism and vaccines, “but there are enough scientific questions remaining that you also cannot say there is none,” says Kathleen Stratton, a pharmacologist at the Institute of Medicine in Washington who has held workshops on the issue.

There is no cure for autism. But 30 years of research supports the efficacy of applied behavioral analysis, a painstaking method by which a tutor teaches a child one skill at a time. To learn how to wash his hands, for instance, a child is taught to pick up the soap, turn on the water, rub his hands together, one step at a time, a process that can take weeks.

And drugs, especially antidepressants known as SSRIs or selective serotonin re-uptake inhibitors, can also help, especially in children and adults who are anxious and frustrated.

And earlier this year, researchers showed an anti-psychotic drug called Risperidone reduced aggressiveness in autistic adults. Trials are now under way to see if it works in children, too.

Some researchers think vitamin B6 supplements may also help.

But the big buzz is over Secretin, a hormone made by Ferring Pharmaceuticals in Tarrytown, N.Y. Because it is FDA-approved — as a single dose to help diagnose pancreatic problems — it is not illegal for doctors to prescribe it “off-label” for other purposes. And many do, with desperate parents and willing doctors often hooking up through the Internet.

By Victoria Beck’s estimate, 1,000 autistic kids have been given Secretin, many more than once.

In fact, there’s been such a run on the drug that the manufacturer says it will be in “short supply” into 1999. (The Becks are seeking a “new use” patent for Secretin and plan to donate proceeds to research.)

The child health institute has received so many questions it has posted a statement on the web (www.nih.gov/nichd) — saying it has no position on Secretin because there’s so little data.

In fact, the only published research was a report in January by the University of Maryland researchers who treated Parker Beck. They found that Secretin did appear linked to a “dramatic improvement” in behavior, eye contact, language, and alertness in Parker and in two other children.

That’s not exactly overwhelming evidence, and even Victoria Beck guesses that Secretin may help less than 50 percent of the time.

There’s no obvious reason why a drug that boosts pancreatic juices might combat autism, although the “gut-brain” theory of autism suggests a link between cognitive and digestive problems. Nor is it clear whether Secretin has bad side effects, though none have surfaced so far.

So it’s no wonder that some families, like the Martins of Salisbury, remain “wary” about giving Secretin to their autistic children. And others, like Joan Fallon, a 39-year-old Marshfield woman who has 36-year-old twin brothers with autism, worry about Secretin”s safety and efficacy in autistic adults.

The answers will only come with clinical research, and several researchers, including psychiatrist Cook of Chicago, are about to begin careful placebo-controlled, double-blind studies.

“I understand the desperation fueled by this disorder, . . . and that desperation should fuel our devotion to developing cures that are proven,” says Cook, who had an autistic brother and has spent his career trying to understand the disease. But until those data are in, “it is cruel to wave the flag of cure before there’s more certainty.”

True, but that could be months or years. In the meantime, the families of autistic patients can at least raise the issue with doctors — and learn all they can from those who’ve tried it.

  • National Alliance for Autism Research, 1-888-777-6227 (On the web, www.naar.org)
  • Autism Society of America, 1-800-328-8476 (On the web, www.autism-society.org/
  • Cure Autism Now, 1-213-549 0500. (CAN has started a gene bank for families with more than one member affected by autism. If you want to participate, call this number.) On the web, www.canfoundation.org.
  • Autism Research Institute, 1-619-281-7165, which has compiled information on Secretin.
  • The Giving Back Fund, which manages the Doug Flutie, Jr. Foundation for Autism, 1-617-556-2820. (This fund, established by the Buffalo Bills and former Boston College quarterback whose son is afflicted, helps low income families of children with autism.)
  • Language and Cognitive Development Center in Boston, a school for children with autism, 1-617-522-5434 or 1-800-218 5232. (web site: www.millermethod.org)
  • National Institute of Child Health and Human Development, 1-800-370-2943
  • National Autism Hotline, 1-304-525-8014.
  • National Organization for Rare Disorders, 1-800-999-6673. (web site, www.rarediseases.org)
  • The Option Institute, 1-800-714-2779 or on the web, www.option.org

“Unlocking the Potential of Secretin,” a book by Gary and Victoria Beck, is available for $15 through the Autism Research Institute. Proceeds go to the institute. Send check to: Autism Research Institute, 4182 Adams Ave., San Diego, CA 92116, or fax credit card order to: 619-563-6840.

 

Medical needs, politics collide

December 21, 1998 by Judy Foreman

Sixteen years ago, Doris Laird, a humanities professor at Florida Agricultural and Mechanical University in Tallahassee, developed a benign brain tumor the size of an orange.

She had surgery — an operation that took 22 1/2 hours. It worked, or so she thought. But four years later, the tumor, a meningioma, was back. She had more surgery; 12 hours this time. Six years ago, it came back again, growing so much it threatened her vision — and her life. She had another 12-hour operation.

In 1994, Laird began taking RU486, the French abortion pill that is not approved for use in this country, on a “compassionate use” basis. There is preliminary evidence that the drug, which blocks the hormone progesterone, also slows the growth of meningioma. In Laird’s case, she says, it “stopped my tumor completely from growing.”

There’s also evidence that RU486 may be useful for a number of other medical problems, including fibroid tumors of the uterus; endometriosis (benign growths of tissue from the lining of the uterus; and Cushing’s Syndrome, a disorder of the pituitary gland.

To get RU486 on a compassionate use basis, Laird, like other patients in the same predicament, had to get an American doctor to prove to the US Food and Drug Administration that she had a serious disease that might respond to the drug. The doctor then arranged with the small French company that sells RU486 in Europe to send it free to her here.

Though cumbersome, this arrangement worked well enough for a while. But in a troubling example of the way politics can sometimes get in the way of legitimate medical needs, it all fell apart this summer when Exelgyn, the French company that in 1997 was given rights to RU486 by the original manufacturer, Roussel Uclaf, balked.

“We are ready to sell the tablets at cost, $5 a tablet,” says the company spokeswoman, Catherine Euvrard. “We are trying to find a US-based organization which is responsible enough to understand that it is up to a US organization to take care of US citizens, not to a tiny French company. I cannot tell you more.”

Laird would have been willing to pay, but like an estimated 25 to 30 other patients in similar straits, she has been caught in a web of red tape and abortion politics.

In 1996, RU486 was deemed “approvable” by the FDA as an abortion pill, but it has not been finally approved and cannot yet be marketed here. (Once approved, RU486, also known as mifepristone, could legally be used “off-label” for other medical purposes such as brain tumors.)

The New York-based Population Council, a nonprofit research group, has had the US rights to RU486 since 1994, but the company it licensed to actually produce and market the drug in the United States, the Danco Group in New York, is still in the process of arranging for manufacturing and distribution.

Danco, says spokeswoman Heather O’Neill, expects to make it available in the US “sometime next year.”

Jennifer Jackman, director of policy and research for the Feminist Majority Foundation, a Virginia-based national women’s rights group trying to bring RU486 to this country, says the “whole compassionate use thing has been a casualty of anti-abortion politics.” She adds that “plans are being worked out to provide it. I can’t be more specific.”

The National Right to Life Committee, prominent in the fight against abortion and RU486, did not return repeated calls.

Sandra Waldman, spokeswoman for the Population Council, echoes that. For two years, the council provided RU486 on a compassionate use basis to 24 patients from a supply it had obtained for research purposes, but that supply has been exhausted.

Waldman adds that the council is “very aware” of the supply problem. “Plans are being worked out for a strategy to handle current and new cases of compassionate use,” she says. “I can’t say more. An announcement will be made soon by the people involved. It isn’t all worked out.”

It certainly isn’t. In theory, patients like Laird could try to buy RU486 from doctors in Europe, where it is sold legally. But even in Europe, the drug is tightly controlled and is generally available only for abortions.

Even if they succeeded in buying RU486 in Europe, patients fear it would be confiscated if they tried to bring it into this country. The FDA allows importation of limited quantities of unapproved drugs for personal use in life-threatening situations. Recently, after consulting with its lawyer, the agency said it would “consider” allowing patients with meningioma to import a three-month supply. But patients worry because an “import alert” the FDA imposed in 1990 forbidding the import of RU486 for abortion purposes is still in effect.

For patients in whom RU486 does seem to slow brain tumor growth, there is great frustration that politics limits their options — even among those who once called themselves opposed to abortion.

Laird, who says her husband “lives on the Internet trying to solve this for me,” says she is “generally against” abortion. But she adds, “I can’t be against its being made legal. We’re talking about my sight and my life. It’s become very personal.”

It’s personal, too, for Anne McGinnis Breen, a Tucson woman who is 51 and had her first meningioma surgery at 39. She is a “practicing Catholic, married for 30 years, with three children. I don’t consider myself a feminist.”

But six years ago, her tumor recurred. “I am convinced,” she says, “that if I could have had this medication after that first craniotomy, I would not have had this recurrence.”

She has been on RU486 for two years — she has a small supply left — and according to the brain scans she gets every four months, her tumor has stopped growing. “Believe me,” she says, “I’m a radical now.”

Lyle R. Groshel of Virginia Beach, Va., echoes that. He won’t state his position on abortion.His wife’s meningioma has been treated with radiation, but if it grows back, “her only option is to find a drug that may stop the growth,” he wrote in an impassioned e-mail.

“I find it reprehensible that our government can prevent the importation or production of RU486 for use by people with meningioma.”

 

SIDEBAR

How RU486 does its job

 

RU486 works by blocking progesterone, a hormone needed for pregnancy. In combination with another drug, misoprostol, RU486 induces miscarriage. Taken alone within 72 hours of unprotected sex, it works as an emergency contraceptive.

The reason it may work on meningiomas — rare, noncancerous brain tumors that strike about 4,000 people a year — is that many of these tumors are also driven by progesterone, and blocking progesterone may slow the tumor. Surgery often works, but the tumors can regrow.

Because of its progesterone-blocking action, RU486 may also help control endometriosis (abnormal growth of uterine tissue outside the uterus) and fibroids, benign uterine tumors.

Through another mechanism, blocking of the hormone cortisol, RU486 may help treat Cushing’s syndrome, a hormonal abnormality.

So far, the data supporting the use of RU486 for brain tumors are preliminary. In 1991, California researchers reported in the Journal of Neurosurgery that they tried RU486 in 14 people with inoperable meningiomas, and five responded well.

That may sound unimpressive, but it’s “very encouraging,” says Dr. Daniel Karp, director of cancer clinical research at Beth Israel Deaconess Medical Center in Boston.

So encouraging, in fact, that the National Cancer Institute set up a placebo-controlled, multicenter study involving 200 meningioma patients. That study ended in July and results are not yet ready, says Karp, who was one of the investigators.

Even if RU486 is not a magic bullet for meningioma, “the results of the study need to be looked at — these patients are not surgically treatable,” adds Dr. John Erban, chief of hematology and oncology at New England Medical Center in Boston and another investigator in the meningioma study.

For some, it’s sneezing all the way

December 14, 1998 by Judy Foreman

You’re running around getting ready for Christmas or Hanukkah or Kwanzaa or Ramadan – or just a generic holiday party.

You shop. You cook. You get the candles from the bottom drawer, the decorations from the basement. If Christmas is your tradition, you probably get a tree, too, all fragrant and piney.You certainly don’t need something else to worry about – like holiday allergies.

Sorry about that.

While people typically associate allergies with the pollen that causes wheezing and sneezing in spring and summer, many of America’s 50 million allergy sufferers are actually miserable all year long because of allergies to mold, dust mites, pet dander, and in some places cockroaches and their droppings.

On top of those perennial miseries, some poor souls find their allergies or asthma get worse during the holidays.

For instance:

  • The sap of Christmas trees contains terpenes (compounds that are also found in turpentine), which contribute to the lovely scent but can also be strong irritants to the nasal passages of susceptible people, says Dr. Ira Finegold, director of the allergy section at Roosevelt-St. Luke’s Medical Center in New York and past president of the American College of Allergy, Asthma and Immunology. Some trees may also carry mold.

  • If you have food allergies – the big culprits are peanuts, tree nuts like walnuts and pecans, shellfish, fish, eggs, milk, wheat, and soy – you have to be careful year-round.

The trouble is, says Anne Munoz-Furlong, founder of the Food Allergy Network in Fairfax, Va., food is central to most holiday gatherings and cooks get extra-creative at the holidays.

This means you have to be extra-vigilant about piecrusts that may contain hidden nuts. Ditto for imported chocolates (with uninformative labels) and eggnog fluffed up with raw egg white, which is even more allergenic than cooked egg white.

  • Smoke, from Hanukkah candles, cozy fireplaces, and after-dinner cigars or cigarettes, can also be an irritant to people with asthma and other respiratory problems.

  • So can dust and mold on ornaments, especially if you store them in dusty, moldy places like a basement.

  • And of course, perfume or after-shave may seem the perfect gift, until the recipient runs gasping from the room.

While some allergies have such a dramatic onset they’re impossible to miss, others can be difficult to diagnose, especially in the winter when you’re more likely to attribute sneezing and runny noses to colds.

But if your “cold” lasts more than a week or so – especially if your nasal discharge is clear and you have no fever – you may have allergies.

Dust mites are a major culprit. Even if you keep your own home scrupulously clean, when you visit other people over the holidays who aren’t as vigilant you may get an allergy flareup.

The mites reside in bedding, pillow cases, bedclothes, and feed off tiny particles of human skin that have been shed, says Dr. Robert K. Bush, chairman of the indoor allergen committee of the American Academy of Allergy, Asthma and Immunology. Dust mites also thrive in carpets, says Bush, a professor of medicine at the University of Wisconsin in Madison.

Animal dander – shed from a pet’s skin, saliva, and urine – is another problem you may have under control in your own pet-free home, but not when you go visiting.

HEPA (or high-efficiency particulate arrestor) machines may help clean the air of some allergens, but they’re not cheap ($200) and you shouldn’t expect the host or hostess to buy one when you visit. They are also “of limited utility,” because some allergens like dust mites settle to the ground and don’t circulate much in the air, says Bush of Wisconsin.

What can help, if perennial or holiday allergies get to you, is to see an allergist – now, before the holidays arrive. At the very least, he or she may be able to help identify the problem and prescribe medications that can help. Claritin, Allegra or Zyrtec are a few of the many available. Over-the-counter medications such as Nasalcrom may help, too. And if you start soon enough, you may also get a series of desensitization injections.

For severe allergies, ask your doctor about a prescription for an EpiPen (pre-measured epinephrine) and carry it with you, especially to holiday parties.

Remember: Allergies are no joke. Airborne allergens and irritants can lead to serious inflammation of the bronchial tubes and sinuses (the cavities around the eyes and nose). Once the sinuses are blocked, mucus can’t drain properly and drips into the lower respiratory tract, causing bronchitis and asthma. Asthma kills 5,000 people a year.

Food allergies are no joke either. About 5 million Americans have them and an estimated 100 to 125 die every year, typically from a reaction called anaphylactic shock, in which blood pressure falls, you lose consciousness, and may develop hives, wheezing, vomiting and diarrhea, and severe shortness of breath. The flip side of all this is that there’s lots you can do to minimize allergies. And at least so far, there’s no evidence that anybody is allergic to reindeer. Or mistletoe.

Avoiding holiday allergies

  • Christmas trees, wreaths, boughs – keep your distance if they’re a problem. Consider getting an artificial tree instead.

  • Wash off dusty, moldy ornaments, too.

  • If you have food allergies and get invited to parties and potluck dinners, take a dish you know is safe and be first in the buffet line. Take a hearty portion, then don’t go back – by then, the serving utensil may have been used on another dish that could trigger your allergies. Or eat before you go.

  • Don’t cave in to pressure to sample a tiny bite unless you’re sure it contains no allergy-triggering ingredients.

  • Keep an EpiPen with you.

  • Use smokeless and unscented candles if regular candles are irritating. Don’t insist on a fire if anyone in the room has asthma, emphysema or other respiratory problems.

  • See an allergist if over-the-counter remedies don’t help.

For more information, contact:

  • 1-800-842-7777 begin_of_the_skype_highlighting              1-800-842-7777      end_of_the_skype_highlighting, the American College of Allergy, Asthma and Immunology. Ask for a new brochure called “You can have a life without allergies.” On the web, it’s http://allergy.mcg.edu

  • 1-877-9-ACHOOO begin_of_the_skype_highlighting              1-877-9-ACHOOO      end_of_the_skype_highlighting (1-877-922-4666 begin_of_the_skype_highlighting              1-877-922-4666      end_of_the_skype_highlighting), the National Allergy Bureau, run by the American Academy of Allergy, Asthma and Immunology. Ask for a brochure called “Because Allergies Last All Year Long.” On the web, www.aaaai.org/nab

Freezing, balsting, peeling away scars

December 7, 1998 by Judy Foreman

Ken Glasser, a 39-year-old Billerica man who works as a buyer of components for aircraft instruments, has been through hell trying to get rid of the stubborn scars on his chest.

He tried laser treatments, which reduced the thick, ropy scars, called keloids, for a while. But when the treatments ended, the scars – which often occur after injury, vaccinations, or even an infected hair follicle – got itchy again and started growing again.

He tried freezing, including one memorable session in which, he says, the doctor “took the safety nozzle off the liquid nitrogen gun and blasted the scars big time.”

His physician, Dr. Kenneth Arndt, chairman of the dermatology department at Beth Israel Medical Center, puts it more delicately. There’s no safety nozzle, he says, but he did switch attachments to get a thick spray – “more like a fire hose” – in order to penetrate the scars more deeply.

That hurt – more than either Glasser or Arndt expected – but helped enough that Glasser was game for more. In later visits, Arndt anesthetized the area, froze the scars with liquid nitrogen, waited until they turned spongy, then injected them with steroids to cause atrophy. That worked, but not enough to make the scars go away.

So Glasser’s at it again, this time with the addition of a cancer chemotherapy drug called 5-FU that’s injected into his scars in hopes of preventing excessive division of skin cells.

Glasser’s battle with scars is unusually dramatic, but we’ve all got them to some degree – “ice pick” marks from acne, craters from chicken pox, old badges of courage from sports. And while many scars become invisible with time, others – depending on where and how bad they are – can be a source of embarrassment.

But in recent years, doctors have been finding better ways to attack scars, even old, stubborn ones. Usually, they can’t banish them totally, but they can often make them look better.

Scars are “nature’s repair” system, says Dr. David Alkek, clinical professor of dermatology at the University of Texas Southwestern Medical Center in Dallas.

If you injure just the outermost layer of skin, the epidermis, you won’t get a scar, notes Dr. Brett Coldiron, a dermatologist at the University of Cincinnati. But when the injury extends into the dermis, you form a scar. It’s the job of fibroblast cells in that layer to do just that – pump out collagen, the glue-like tissue that helps hold wounds – and other parts of the body – together.

Sometimes, collagen does its work, then stops. But if the body makes too much, the result is a big, “hypertrophic” scar that may take a year or more to diminish. In 1 percent of people, scarring is abnormal and results in keloids, like Glasser’s, that well spread beyond the initial injury.

Scars form differently on different parts of the body because the skin varies so much, with the worst scarring usually on the chest, shoulders and upper back. You can get a scar from “the least little cut on the hand,” notes Alkek, but the same injury on the face won’t cause one.

In fact, the face is the “most forgiving area,” says Dr. Robert Stern, a Beth Israel dermatologist. “Healing times are very different. On the face, we leave stitches in for five to seven days; on the trunk, 10 to 14.”

So what can you do to help prevent scars in the first place and to minimize those that do form? Plenty, as it turns out.

With a new scar, the key is to keep the area moist and free of infections, with unguents like Aquaphor Healing Ointment. If the injury is deep, you should see a doctor for stitches or a new product called “skin glue,” a high-potency adhesive that holds the edges of the wound together as it heals.

Pressure bandages can also help prevent bad scars, by forcing collagen to be “laid down” properly; compression of the area can even help rearrange collagen in some old scars.

Over-the-counter strips of Silastic or silicone also help make scars – even some old ones – become flatter and turn white faster. No one knows why, but the strips may keep moisture in.

With immature scars – six to eight weeks old – dermabrasion can make a potentially bad scar less unsightly. The skin is “sanded,” under local anesthesia, with a diamond wheel or rapidly-rotating wire brushes, to grind the epidermis down to the level of the scar. The epidermis then regrows, hopefully hiding the scar.

Dermabrasion is often used on acne scars, and works best on faces. But the procedure sprays blood around – not a good idea in the age of AIDS – and it takes a trained eye to gauge depth. Chemical peels do much the same thing, but again, it takes a trained hand to avoiding burning or otherwise damaging the skin.

An increasingly popular alternative is laser skin resurfacing, which, like dermabrasion, works best on faces, not torsos. Usually, CO2 lasers are used for deeper skin problems and Erbium:YAG lasers, for more superficial problems. For scars that are red or purple from blood vessels, pulsed dye lasers can decrease color and flatten the scar.

Lasers convert light energy to heat that strips away thin layers of skin cells bloodlessly and with great precision. The disadvantage of laser resurfacing is that skin can stay red for weeks, longer than with old-fashioned dermabrasion.

To get rid of deep pits from acne, doctors often “punch” into the scar with a surgical instrument, take out old scar tissue, then bring the edges of the hole together with stitches. Another option is to dig under the pit with a sharp instrument to loosen it and make it shallower. The cosmetic result from this process can then be improved by skin resurfacing.

For some scars, especially long ones, the problem is partly perceptual. The human eye fixes on unbroken scars, but may barely notice one that zig-zags. For that reason, dermatologic or plastic surgeons cut open a long scar, then stitch the skin together again in stair-step fashion to make it less visible.

The direction in which a scar lies is also key, says Dr. Paul R. Weiss, a New York plastic surgeon. On the forehead, “it’s hard to do anything” for a vertical scar. But if a scar is horizontal or oblique, a surgeon can re-position it so that it is hidden by natural creases in the forehead.

The most difficult scars are keloids like Glasser’s. Though these scars can get huge, the cause is sometimes elusive. Often it’s surgery or an injury, but it can be something as minor as an infected hair follicle that the patient doesn’t even remember.

Weiss says he’s had “wonderful successes with surgery” for keloids, provided surgery is followed by steroid injections into the scars and radiation therapy to stop cell division.

But many dermatologists disagree, arguing that cutting out keloids may create worse keloids afterward. The exception to the no-cutting rule are keloids on earlobes – often from ear piercing – which can often be trimmed away successfully.

Many people, of course, simply live with their scars, figuring that beauty is more than skin deep. But some, like Glasser, keep seeking treatment in hopes of getting the skin back to normal.

Glasser says his keloids itch and are “a tremendous nuisance.” And they’re sensitive, especially when he wrestles with his two “little guys,” aged 1 and 3. “My one- year-old sits there and it hurts,” he says. Besides, he adds, he just doesn’t “want to drag this ball and chain around.”

Some home remedies

There are numerous over-the-counter products to improve the appearance of scars, though data to back the claims are scarce.

Silicone sheets – such as ReJuveness, Sil-K, Silastic Gel Sheeting and Cica-Care – often work, dermatologists say, though nobody knows why. One theory is that they may prevent water loss through the skin. Another is that they may change the skin in a way that nudges collagen – the fibrous protein that scars are made of – to re-align in a more orderly fashion. Or perhaps the slight pressure from wearing a silicone bandage may itself help a scar remodel.

These products can be expensive – $40 for a small sheet.

Other products, such as Mederma or Kelocote, are gels that are spread on scars. Mederma, made from onion extracts, may decrease the thickness of some scars, but again, the evidence is sketchy and nobody knows why it would work. Kelocote is a silicone gel that presumably acts somewhat like silicone sheets.

Many people swear by vitamin E for scars, but dermatologists say there’s little evidence for this. There’s even less for another popular remedy – emu oil.

If your scar is recent and healing well, these do-it-yourself remedies may help. If you have a thick, old scar that you want to treat, you should probably see a dermatologist.

 

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