Help! My pediatrician's not listening to me (artic

Discussion in 'General Parenting' started by Sheila, Nov 15, 2007.

  1. Sheila

    Sheila Moderator


    Help! My pediatrician's not listening to me

    By Elizabeth Cohen
    Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.
    (CNN) -- One day in the pediatrician's office, Mia Redrick put her foot down.
    Redrick says the pediatrician wanted to take blood every other day from her 2-week-old son, Matthew, to check on his jaundice. Redrick thought that the jaundice was improving and that it was unnecessary to cause her baby so much pain.
    For a while, it felt as if lines had been drawn in the sand, Redrick says. Conflicts between pediatricians and parents are not uncommon, says Dr. Vicki Rackner, who left her surgical practice to become a patient advocate.
    On the one hand, parents know their children best.
    On the other, the doctors are trained medical professionals.
    Sometimes both sides want to take the lead.
    "I see it as a metaphorical fall in 'Dancing With the Stars,' " she says. "It's a disconnect in the dance between parents and pediatricians."
    So what do you do if you feel yourself taking a tumble in the pediatrician-parent dance?
    Here are stories of three moms who had tough times with pediatricians, and advice from doctors who specialize in physician-patient communication:
    Redrick says pediatrician didn't believe her
    Matthew was 2 weeks old when Redrick noticed his skin and the whites of his eyes were taking on a yellow tinge.
    At her pediatrician's suggestion, she nursed as often as possible -- the more bowel movements Matthew had, the more he'd get rid of the bilirubin, the substance that builds up in the body and causes jaundice, which in rare cases can cause brain damage.
    Redrick showed the pediatrician the notes she'd taken to prove he was nursing and pooping more often. She pointed out that his skin and eyes were becoming less yellow.
    Still, the pediatrician insisted on blood tests every other day.
    "I felt like she didn't completely believe everything I was saying," Redrick says. "I had to put my foot down and say, 'This is my third child. You have to trust me on this.' "
    In the end, Redrick's pediatrician agreed to keep an eye on Matthew, but not do blood tests every other day.
    "It was tough," Redrick says nine years later about the conflict with her pediatrician.
    Doctor says to find a middle ground
    Both Redrick and her pediatrician wanted what was best for Matthew, but they came at it from different directions, observes Dr. Jennifer Shu, a spokeswoman for the American Academy of Pediatrics.
    Redrick wanted to minimize pain for her baby, and the doctor wanted to make absolutely sure she didn't miss a rare complication of jaundice.
    "A parent should explain what they want to do. Then they can ask the doctor, 'What's the downside of doing what I want to do?' " says Shu, co-author of "Heading Home With Your Newborn: From Birth to Reality."
    If they can't reach a middle ground, Shu suggests calling in another pediatrician from the practice.
    "Sometimes getting another person involved can defuse the situation."
    Shelly: 'These drugs aren't working'
    When Shelly's son, Travis, started to misbehave in first grade, her pediatrician diagnosed attention deficit and hyperactivity disorder and prescribed stimulant drugs.
    After months on the drugs and several dosage changes, the medications didn't help, says Shelly, who asked that her last name not be used.
    Shelly took Travis to another pediatrician, then another and another.
    In all, she says, eight doctors prescribed stimulants such as Ritalin -- often increasing the dosage -- even though she explained they hadn't worked before.
    "They just kept saying, 'You need to give it time,' " Shelly says. "But he was so jacked up on drugs he couldn't sleep at night. We thought, 'These drugs aren't working, so why do they keep increasing the dosage?' "
    Finally, after three years of trying stimulants to treat ADHD, a psychologist diagnosed in Travis a high-functioning form of autism. At 9, Travis stopped the ADHD drugs and started therapy for autistic children.
    His behavior improved, his grades went up, and now at 14, his mother says, he's a "model student."
    "I cringe and cry when I think back on the three years wasted knocking on doors," she says.
    Doctor says to set timetables
    Dr. Delia Chiaramonte says when a treatment has been going on for a long time and isn't working, a parent should begin to suspect a misdiagnosis.
    Chiaramonte, a family physician who is a private consultant for patients having trouble navigating the health care system, says in this situation, parents should ask whether some other disease could possibly be causing the problems.
    "A parent can look up the symptoms on the Internet and see what other behavioral problems could be causing these symptoms," she says. "Then they can ask, 'Doctor, is it possible that my child's problem could be one of these other diseases?' "
    Shu suggests setting timetables when your child starts a treatment.
    "Ask how long it should take the drugs to work and ask what you're going to do if they don't work," she says.
    Sheri says she knows her son better than anyone
    A lung infection is always dangerous, but it was especially dire for Tyler Howard, a 16-year-old quadriplegic who's on a respirator.
    Doctors told Tyler's mother, Sheri Green, that they wanted to use Cipro, a powerful antibiotic. Green told the doctors he'd had an allergic reaction to it years before, but the doctors persisted.
    "Because I don't have letters next to my name, doctors take what I say with a grain of salt," she says. Against her better judgment, Green gave permission for the doctors to use the antibiotic.
    "I told him he was highly allergic, but the doctors said it was one of the only ones that would work for him, and maybe he'd outgrown his allergy," she says.
    Green says she quickly regretted her decision. Travis had an allergic reaction to the antibiotic.
    "They said they were really sorry. They said, 'We should have listened to you.' "
    Doctor tells parents to stand up for child
    "This is a classic story," Chiaramonte says. "Parents of children with severe disabilities are often the experts on their children. They're with them all the time."
    The trick here, she says, is to stand firm, even when you know you're annoying the doctor.
    "You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly. For example, Green could have asked why the doctor didn't want to use one of the other potent antibiotics.
    Rackner says patients can keep in mind stock phrases they can use to make the conversations easier.
    For example, she says, one way Green could have started the conversation is: "I honor your years as a practicing physician; I hope you honor my years as this child's parent 24/7.”
    Elizabeth Cohen is a correspondent with CNN Medical News.
  2. susiestar

    susiestar Roll With It

    Some very good points.

    Personally, I HATE it when a doctor says one of my children will have outgrown a medication allergy. While they may have, I have YET to see it happen. Each of my children shares some common medication allergies, and each has some of their own.

    I also do not EVER tolerate being treated like I do not know what is going on. If that happens, I speak up and let the doctor know I am the expert on this child, he/she is the expert on the diseases.

    I try to reach a middle ground.

    I have learned that if a clinical assistant is dismissive of my concerns that often the doctor will never hear of them. NOT ethical, or standard operating procedure, but it has happened several times in my knowledge. Drives me nuts. I find that a call where I ask to hold for the doctor, not the assistant, is often best. (the latest debacle with the pain doctor and the week long migraine is the exception - the doctor fully knew and approved of what the nurse told me. And she was wrong.)

    With medical issues I ask why. Like a 3yo, why why why. Why this time. Why not this?? Why this and not a different medication??

    What will it do? By when?? What side effects can happen?? What do we do about them??

    It drives some docs nuts, because I should just accept what they say. And that is OK, IF they won't charge!!! Put like this, they usually will sit and answer questions.

    Hugs to all, great article!