She thought he was just throwing a tantrum: An IV drug error

When six-year-old Chance Pendleton came out of surgery for a wandering eye, it was obvious that something was not right. "He was crying hysterically, vomiting and kept saying, 'I wish I was dead,'" his mother said.

The boy had been through surgery before and had never reacted this way: "The nurse was quite peeved and wanted me to calm him before he disturbed anyone," his mother said, adding that Chase was denied more pain and anti-nausea medication. "She thought he was just throwing a tantrum."

After about 20 minutes, another nurse walked by, and Chance's mother beckoned her for help. The nurse checked the intravenous line in Chance's ankle and saw that it wasn't inserted correctly. He wasn't receiving any medication. She immediately fixed it, bringing relief to Chance in a matter of seconds.

Chance's mother said she had not been aggressive enough. "I wish I had been more confrontational sooner," she said. "That was the worst 20 minutes of my life."

Advice: Parents need to be the eyes, ears and advocates for their children. Dr. Steve Selbst, author of a study of malpractice suits, says, "You know your child, and if you feel something's wrong, go up the chain of command."


Read another story of a mother who saved her son.

Thanks to Laurie Tarkan for the source article in yesterday's New York Times.

His last, best and only chance: Experimental drug for Duchenne muscular dystrophy

Doctors discovered that Jacob Gunvalson had a rare and devastating genetic disorder – Duchenne muscular dystrophy - when he was 7 or 8, about eight years ago. Many of the young men who have the disease, which nearly always affects males, do not live past their 20s. A biotechnology company is now testing an experimental drug, PTC124, which would give Jacob "his last, best and only chance to slow, stop or even reverse the effects of his condition," according to his attorney, Michael Hatch.

But the company refuses to give Jacob the drug, as he does not meet the narrow guidelines for the research protocol. The reason: scientists at the company worry that it may not be effective for a patient at Jacob's stage of the disease: Jacob can no longer walk. If the drug is known not to be effective in him, the company executives worry that that news may block the company's chances of proving it is effective and bringing it to market.

Jacob's mother Cheri, who has a masters degree in nursing, seems to have done all the right things. She has been active in a parent's advocacy group, Parent Project Muscular Dystrophy, which has helped PTC Therapeutics, the drug maker, to find financing for its research. Indeed, she was instrumental in getting federal legislation passed to provide more research money for the disease.

The company may even have told her that it would give Jacob the drug. Drug companies sometimes allow patients access to experimental drugs through a "compassionate use" policy. In this way, patients enroll in a single-patient study, or participate in a clinical trial, even if they do not meet the eligibility criteria and their results are not included in the final study.

In the absence of that, both Jacob and his mother are bitterly disappointed, after thinking "so many times," he said, that he would receive the drug. He is increasingly too tired to do some of his favorite activities like cooking and painting.

Advice to family members of gravely ill patients: Explore compassionate use if an appropriate drug is in clinical trials. If the answer is no, take your story to the news media.

Read an experimental drug story.

Thanks to Reed Abelson for the source article in the July 17 issue of the New York Times.

Easy for the drug dealers to sneak into your living room: Online drug sales

"The Internet made it easy for the drug dealers to sneak into your living room," said Francine Haight of La Mesa, California, whose son Ryan died in 2001 at 18 from an overdose of hydrocodone, generic Vicodin, which he had secretly ordered online with a debit card. An A-student and varsity tennis player, he had claimed in an online questionnaire to be a 25-year-old with back pain. He got his prescription and received the drug in the mail. His mother, a registered nurse, has fought against online sales since then.

In April, the U.S. Senate passed the Ryan Haight Online Pharmacy Consumer Protection Act, which would require certification of online pharmacies. It would also require doctors see patients before prescribing controlled substances. The bill is now in committee in the U.S. House of Representatives. At least eight states have passed laws barring electronic prescribing or sales without a legitimate prescription.

"Abuse of prescription drugs has exploded among college students, and…one way they get these drugs is over the Internet," said Joseph Califano, the director of the National Center on Addiction and Substance Abuse at Columbia University. The use of prescription opioids and anxiety drugs, especially in combination, accounts for a growing share of deadly overdoses nationwide.

Advice to parents of college students: Read their monthly credit card statements.

Read another prescription drug overdose story affecting a well-known actor.

Thanks to Erik Eckholm for the source article in the July 9 issue of the New York Times.

What's risky for teens is parents: Insulin pumps for controlling diabetes

Many newspapers described the FDA study by Dr. Judith Cope and others in this month's issue of the medical journal Pediatrics on the risks to teenagers of insulin pumps for their diabetes. Here’s the reaction of Reagan Schweers' mom, from her blog:

"Insulin Pumps Risky for Teens" was the title of an article I read in the Dallas News this morning. Right next to the article was a picture of my son's insulin pump.

I read the article with a fairly open mind. I know that the idea of a headline is to grab attention. Ok, so I was grabbed. The article wasn't especially informative so I got online to check out the "study" that was mentioned. The study was from a well-known medical journal, Pediatrics. Since I worked in pharmaceutical sales and have read MANY medical articles, I'm not afraid to wade through the data to figure out what the study really said.

 So here's my take on things.

What the FDA found over the course of 10 years of data was that teens do risky things and aren't the best at caring for their $6000 medical device. Many of the incidents that had occurred were due to teens doing stupid things - dropping their pump, ignoring error messages, ignoring alarms, not checking their infusion lines. Of course, my question in all this is, since when is it the sole responsibility of the TEEN to do what the PARENT should be doing? Folks, diabetes is a serious long-term disease. Why would you not review your teen's blood sugar numbers? Why would you not make sure they are using their pump properly? This is a matter of life and death and you are FOOLISH as a parent to ASSUME that your teen is doing everything perfectly.

 I must admit that my son takes care of his pump and his diabetes 100% himself. He is FASTIDIOUS about keeping his blood sugar in control. But my husband and I always check behind him. His endocrinologist checks behind him. The diabetes educator in the endocrinology office checks behind him. And his HbA1C doesn't lie. If it's off, then we know he's not controlling his blood sugar or something is amiss with the pump.



In order to get a pump in the first place, the endocrinology office made Reagan test drive a pump for 4 days to see if he'd like it or not. You also have to go through their training program to even be considered for a pump. Then the pump manufacturer representative came to our house to train us extensively for using the pump. Reagan and I both reviewed the materials that came with his pump.



What we have had with his pump is MUCH better diabetic control of his blood sugar. This means (and is scientifically proven) that he will have less chance of losing his eyesight, losing a kidney or even a foot later in life. He has more freedom to live a "normal life" than he did giving himself multiple injections per day. We are able to closely titrate his insulin dose round the clock with the pump - much closer than we could with multiple injections of insulin.

AND...we just got the new continuous glucose monitoring system and he will be trained on that on Wednesday. He will be able to tell 24/7 - anywhere - anytime - what his blood sugar is. I can't tell you how important that is given the fact that he is will soon be driving solo. Or how important it will be when he's participating in a marching band competition and can't carry his blood sugar test kit with him everywhere. And, NO, insurance wouldn't even pay for it...(but that's a blog for another day).



I guess what makes me most frustrated is that this now gives insurance companies more ammo to say "no" to a device that has given many teens and their parents enormous freedom and peace of mind. In fact, the majority of teens who use an insulin pump will live longer and healthier lives - check that 10-year study. Honestly, what's risky for teens is parents who aren't involved in their lives. It's a partnership with your teen and the endocrinology staff. The pump is the best thing that's happened to Reagan as a diabetic.

Advice: Managing your child's diabetes calls for a partnership of you, your child, and the endocrinology staff.

Read another story about partnership in diabetes care.

Thanks to Reagan Schweers' mom for the source story in her blog, "A little of this and that."

We gave our own orders: Dignity in the hospital

Kathleen Kalt's story:

Patients have no obligation to the "health-care community." In fact, more patients need to know that they do not have to comply with every doctor’s request.

My daughter had leukemia at age 10 and clear-cell sarcoma at 17. She was treated by outstanding doctors, but we all knew she would not survive the second cancer. When she had to be admitted to a major teaching hospital for surgery, it seemed she was on all the grand rounds; everyone wanted to see this rare case and hear her medical history. We didn't think she needed to relive constantly the worst moments of her life. She needed dignity and control. We gave our own orders: "No one will touch her except her primary doctors. She won't answer any more questions. Read her chart for yourself." After seven years dealing with the medical establishment, we knew that the best patients were their own advocates.

Advice to parents: To preserve your child's dignity, you can give your own orders to guide the learning of interns and residents in the teaching hospital.

Read another of our stories about a death with dignity.

Not “just the way it has to be:” Treatment of Hirschsprung’s disease

Matthew Swan is a third-grader with a rare and serious congenital condition called Hirschsprung's disease. It limits the ability of his large intestine to process food. Doctors near his Idaho home had told him to eat a high-fiber diet and use laxatives, which hadn't helped.

Matthew's mother couldn't find specialists near their home, and so had been taking him to a children's hospital in Michigan. But Matthew still got chronic intestinal infections that required frequent visits to the Emergency Room, and prevented him from attending full days of school.

"We were told that this was just the way it has to be," said his mother. She researched colorectal programs, spoke to other parents, and chose to come to Cincinnati Children's Hospital. Doctors there realized Matthew has an exceptionally rare form of the disease, and stopped the high-fiber diet and laxatives. They performed surgery and gave Matthew other forms of help to better control his bowel movements.

Staff at Cincinnati Children's Hospital see part of their job as helping each patient to live as normal a life as possible. That means helping patients like Matthew to remain continent. Not doing so would be a "glaring deficiency," in the words of Dr. Marc Levitt at CCH.

Advice to mothers: Matthew's mother was unwilling to accept the conclusion that nothing could be done. As a patient advocate, you should research alternative places to get treatment, and ask other parents, as she did.

Read more from Reed Abelson’s article in today's New York Times.

People ask if she is British: Hearing testing

Hailey Ems was born weeks early, on the floor of an upstairs bathroom as emergency medical technicians tried to figure out how to get the stretcher upstairs.

She didn't meet the developmental milestones for the first year of life: crawling, standing, and speaking her first words. So doctors tested her for cerebral palsy and muscular dystrophy, but ruled them out. Finally, when she was 14 months old, her ten-year-old brother was the first to realize the truth, saying "I don’t think Hailey can hear."

Hospitals routinely test newborns' hearing. But even that is not a guarantee that deaf and hearing-impaired babies will get the necessary early treatment. Parents of one-third of babies who fail the initial hearing screening do not bring their babies back for a more rigorous test. "If a child isn’t fitted with a hearing aid until age 2, that is when he or she will have to start learning what sounds are. If we catch kids in the first few months, we don't see delays and they do beautifully," says Anne Oyler, an audiologist with the American Speech, Language and Hearing Association.

Hailey, now six years old, received hearing aids soon after her brother's diagnosis. By her second birthday, she had cochlear implants in one ear. Within months, she had reached her developmental milestones. She'll have a cochlear implant in the other ear too.

Now she's entering a local elementary school. The only thing that sets her apart from her classmates is a small speaker for her desk and a microphone that her teachers will wear to amplify the sounds of her lessons. "When she talks, no one knows that she is deaf," says her mother. "She speaks so perfectly that some people ask if she is British."

Advice to parents of young children: Get their hearing tested so medical technology can help them reach their milestones on time.

Read Jamie Talan's source story in the Sept. 4 issue of the New York Times.

He gets to live on: NICU parents

Phillip Rock was born to Denise and Charlie Rock in 2001, 15 weeks prematurely. His life lasted only two days.

A year later, Denise conceived again, and again gave birth early. During Leighton Rock’s 35-day stay in the neonatal intensive care unit (NICU), Denise and Charlie met several other parents of preemies, who could give moral support.

Three years later, Denise gave birth to another premature baby girl, Emerson, now a toddler.

The March of Dimes has started a program to formally provide support to parents of preemies. The March of Dimes NICU Family Support Program also includes an online community at ShareYourStory.org where members who have already experienced preterm labor can share information with those who have not.

Now Denise volunteers at the program’s chapter office at St. Luke’s Hospital in Kansas City, Missouri, near home in Shawnee, Kansas. "Losing a child is the worst thing that has happened in my life," she says. "There are not very many parents [who have lost a child] who get to talk about their child all the time. I say Phillip’s name every day. He gets to live on even though he’s not here….After Phillip died, I vowed not to let his birth and death be for nothing. So even if I help just one person, his life had a purpose."

Advice: Vow to carry on your family member’s spirit.

Read another of our stories about a mother patient advocate, or read Leah Ingram’s source story in the June 2007 issue of Continental.com magazine.

Prime time for medical error: The doctor’s daughter in the night shift

Seven-year-old Jacquelyn Ley was in the hospital for surgery for her shattered elbow. After surgery, night nurses gave her morphine via a pump, inadvertently setting the dose much too high. Luckily, her mother was there, spending the night in her daughter’s room. She noticed that Jacquelyn was barely breathing, and could have died.

Jacquelyn was lucky because her mother was there and because she knew her stuff: Dr. Carol Ley is Chairman of the Board of the University of Minnesota Medical Center and director of occupational medicine at 3M Company. Dr. Ley says, "the night shift, with its hand-offs and staffing issues, is prime time for medical error."

Advice: Get a patient advocate to be with you in the hospital.

Read another of our night-time stories, or read Max Alexander’s source story in the June 2007 Readers Digest.

You’ve got to get them home too: An activist patient advocate for children

In 1978, Julia Mikol was born, with severe combined immunodeficiency, which required her to live in a bubble—a completely sterile environment. When she was three months old she had a bone marrow transplant, which gave her a functioning immune system, but left her unable to breathe on her own. She spent the next two years in the Intensive Care Unit at Memorial Sloan-Kettering Hospital in New York City.

Her mother Margaret moved into the hospital to be with her. Because of the huge hospital bills - $350,000 a year – the Mikols exhausted their medical insurance and had to rely on Medicaid. Though Medicaid would pay the huge hospital bills, its rules initially forbade reimbursing the Mikols for caring for Julia at home much less expensively, at about $50,000 a year.

But after a long bureaucratic struggle, the Mikols became the first parents in New York, and only the second family in the nation, to benefit from the rules of a new federal program that allows Medicaid payment for home care for a child like Julia on life support. "The process transformed my personality," said Margaret. "I had been shy and timid, and I became brassy and obnoxious. I changed into a beast to protect my child."

Julia’s condition worsened as she got older. At age eight, she refused a recommended heart and lung transplant, and her parents reluctantly agreed. Before she died, Julia asked her mother to promise to help other children: "You got me home. You’ve got to get them home too."

Sick Kids Need Involved People is the fulfillment of that promise. The organization, with a shoestring budget, has helped 7,000 families deal with their children’s life support, cancer, HIV/AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, autism, and other conditions. Margaret and her staff help parents navigate the hospital, insurance and Medicaid systems, and assist with school and housing issues, and advise parents on dealing with the sick child’s healthy siblings.

Margaret hopes one day to build a clinically staffed residential community.

Advice: Forward this to your friends with hospitalized children.

Read another of our hero stories, or read Caroline Kennedy’s source story in the June 4 issue of Time magazine.

First thing in the morning: A Hero Mom and a leukemia drug overdose

Her four year old son Michael had just been diagnosed with leukemia. After he spent five days in the hospital, his mother brought Michael Koster home and filled two prescriptions for him.

That night, as Pam prepared to give Michael his first doses of the medications, she read the directions from the bottles and thought something was odd, she told ABC News.

"I said, 'This doesn't seem right,'" Pam said she recalled. Checking with the local children's hospital, she says her fear was confirmed: the pharmacy had mixed up the instructions on Michael's medications, advising Pam to give her son a much larger dosage of a powerful drug, Dexamethasone, than the hospital had directed and to give him much less of a second drug, Methotrexate, which was key to curing his leukemia.

"I went to Walgreens the next day, first thing in the morning," Pam told ABC News. "The pharmacist who filled the prescription was there. I asked to talk to him specifically. I showed him the labels and said, 'This isn't right. I want you to pull what the hospital called in and show me what you did.'"

The pharmacist said he did not have the paperwork handy but would look into the matter. At first she resisted, Pam said, but eventually gave in after being promised the store would call her later that day with more information. The pharmacist's supervisor called her that afternoon, Pam told ABC News. Pam says she admitted the error and vowed to bring it up at the store's next staff meeting.


In fact, as Dr. Marlene Miller at Johns Hopkins Children Center in Baltimore reported today, children with cancer often get the wrong dose of chemotherapy or are given the drug at the wrong time, and many require treatment because of the errors. She and her colleagues studied 800,000 errors, of which 310 involved kids on chemotherapy. Of those mistakes, 85% reached the patient, and one sixth of those were serious enough to require additional care.

Advice to parents of children getting prescriptions: Check the label carefully, and if you find an error, show up and tell them so.

Read another of our children’s overdose stories, or read the source story by ABC’s Brian Ross and Justin Rood.

Thanks, Kim Slack and Joe Brownstein.

One doctor got $689,000: Adverse drug reactions of atypical anti-psychotic drugs

Anya Bailey developed an eating disorder after she turned 12, so her mother brought her to a psychiatrist. The doctor prescribed Risperdal, a powerful antipsychotic drug that had been created for schizophrenia. The FDA has not approved Risperdal for the treatment of eating disorders, but doctors can prescribe drugs as they see fit, and increased appetite is a common side effect.

Anya gained weight, but developed a crippling knot in her back (dystonia), and often awakes, crying in pain. She now receives regular injections of Botox to unclench her back muscles.

A doctor at the nearby Mayo Clinic, which prevents doctors from receiving lecture money from drug makers, insisted that Anya stop taking Risperdal. Anya got counseling, which ended in March. Now she is back to a normal weight, without the help of drugs. Anya’s mother wishes she had waited to see whether counseling would help, before trying drugs.

Anya’s mother was surprised to learn that the evidence backing the use of such drugs was minimal: the relevant medical trials studied as few as eight children. She was also surprised to learn that the psychiatrist had received $7,000 from Johnson and Johnson, the maker of Risperdal, for lectures about one of J&J’s drugs.

Doctors claim that payments from drug makers do not influence their prescribing patterns. But an analysis by the New York Times disputes that, finding that psychiatrists who received at least $5,000 from the makers of these “atypical anti-psychotic” drugs prescribed them three times as often as doctors who received little or no money from drug makers.

One doctor received “more than $689,000” for her drug talks. The last eight presidents of the Minnesota Psychiatric Society all received money from drug makers.

Advice: Ask the doctor what studies say on the long-run effects of the drug being prescribed. Ask about alternatives to drugs, too.

Read another of our adverse drug reaction stories, or the source story in today’s NY Times, “Psychiatrists, Troubled Children and Drug Industry’s Role,” by Gardiner Harris, Benedict Carey, and Janet Roberts.

Our Hero: She Didn't Sue, Part 2: A drug error

Yesterday I described John Eric Kauffman's experience in taking Zyprexa. His mother, Millie Beik, is educating others about the dangers of Zyprexa, in the front-page article in the New York Times. By telling her story, she warns, teaches, and empowers others.

She performed another unusual and vital step: she asked for an autopsy. The doctor who performed it discovered that her son had died from an irregular heartbeat, which the autopsy report said had probably been caused by an enlarged heart caused by his high blood pressure. His high blood pressure had begun during his years on Zyprexa, when he had gained 100 pounds.

Autopsies are rarely performed nowadays, though doctors acknowledge that they provide critical and unique knowledge. They help doctors learn so they will not repeat the same mistakes. Personally, I greatly regret that we did not conduct an autopsy of a family member who almost certainly died from a surgical error.

Advice to family members and friends: If you suspect a death is due to a medical error, gently ask the surviving relative whether they would consider an autopsy, in the interest of saving someone else's life. If they say Yes, help make it happen.

She Didn't Sue: A medication error

His prom photo showed he was a handsome teenager with a messy mop of dark brown hair. He went to college to study political science. But within the next year or two John Eric Kauffman developed mental illness--a severe form of bipolar disorder. In 1992, in his late twenties, he suffered his most severe psychotic breakdown. Over the next 8 years, he didn't suffer any psychotic breakdowns, thanks to lithium and Stelazine. After that, a psychiatrist changed his medications, John stopped taking them, his condition worsened, and he was hospitalized. In the hospital he was given Zyprexa in a relatively high dose. He then remained on Zyprexa for 6 years, and gained 100 pounds, developing heart disease. John's weight gain probably contributed to her son's death in his forties from an irregular heart beat, according to a forensic pathologist.

Such weight gain was not unusual for Zyprexa patients; the drug maker's internal records show one out of six patients gain more than 66 pounds! The drug maker, Eli Lilly, which received $4 billion in Zyprexa sales last year, had long played down data on these side effects.

Lilly has agreed to pay more than $1 billion in settlements to patients. But John's mother is not suing Lilly. She simply wants her son's case to be known as a cautionary story about Zyprexa's tendency to cause weight gain. "I don't think that price should be paid," she said. She added that the company should have been more honest with doctors, as well as the milions of people who take Zyprexa.

Advice for family members: If a member of your family is taking Zyprexa but is not acutely psychotic, discuss the side effects with their doctor. Some leading psychiatrists say that you and your doctor might consider other drugs for long-term treatment.

Source: New York Times articles by Alex Berenson, January 4 & 5: "Mother Wonders if Psychosis Drug Helped Kill Son," and "Lilly Settles with 18,000 over Zyprexa."