It Was Amazing!
    March 25, 2009
    It Was Amazing!

    While I was in New York I got to see a lot of things. Did you know that Toys R Us has a 60-foot Ferris wheel inside and a huge Barbie House and a 40-foot dinosaur? It was soo cool!! (more…)…

    Purple Day Goes International
    March 24, 2009
    Purple Day Goes International

    This year Purple Day has gotten even bigger and on March 9th the Anita Kaufmann Foundation flew me to New York with my Mom and brother Chad for the USA launch of Purple Day. (more…)…

    The First Purple Day
    March 23, 2009
    The First Purple Day

    Last year I emailed all of our government, I even called our Prime Minister’s office, but I didn’t get to talk to him. I called Paul Shaffer from the David Letterman Show and he wore a purple tie …

    About the Renal Tumor Program at my hospital
    March 4, 2009
    About the Renal Tumor Program at my hospital

    As some of you know, a while ago my oncologist and surgeon, David McDermott and Drew Wagner, asked if I'd be willing to be videotaped talking about what I think about the Renal Tumor program they offe…

    You Shouldn't Have to Go It Alone
    February 27, 2009
    You Shouldn’t Have to Go It Alone

    Over 6,000 rare diseases (those that effect less than 1 in 2000 people) have been identified. Many of these diseases are life threatening, but because a relatively small number of people are alive at …

    Chemicals in Your Environment
    December 4, 2008
    Chemicals in Your Environment

    Parents are often surprised when I tell them that a great number of the products we use in our homes are not necessarily evaluated and declared safe by a government entity. The paints that cover your …

    Where’s the Cold Virus?
    October 29, 2008
    Where’s the Cold Virus?

    Think twice before picking up that remote if someone in your home has a cold! Researchers from the University of Virginia, armed with DNA swabs, did a CSI-like evidence hunt in the homes of 30 people …

    Educating Children & Teens with CFS: The Show Must Go On
    October 24, 2008
    Educating Children & Teens with CFS: The Show Must Go On

    Children and teens with CFS have many of the same issues as other children with chronic illnesses, confounded by the fact that they have an illness which is poorly understood, often misunderstood, and…

    Treatment of CFS
    October 23, 2008
    Treatment of CFS

    In this ongoing five-blog series about managing CFS in children and teens, I regret that the treatment section will be the shortest! While CFS research is being done on many fronts, much about this di…

    The Diagnosis of CFS
    October 22, 2008
    The Diagnosis of CFS

    As we have discussed previously, there is no diagnostic test for CFS. The diagnosis is a clinical one: the patient’s symptoms must meet the case definition criteria (See “Do I have CFS” box belo…

    Cold Medicine for Your Kids
    October 22, 2008
    Cold Medicine for Your Kids

    Last year an advisory panel of independent experts convened by the FDA recommended that the FDA ban popular over-the-counter oral decongestants, antihistamines and cough suppressants for children unde…

    The Enigmatic Symptoms of Chronic Fatigue Syndrome
    October 21, 2008
    The Enigmatic Symptoms of Chronic Fatigue Syndrome

    Today I’ll discuss the symptoms of CFS and why this diagnosis is so confusing. Ironically, part of the confusion about CFS comes from its name. The focus on fatigue tends to overshadow the numerous …

    What is Chronic Fatigue Syndrome: Brian’s Story & Making the Diagnosis
    October 20, 2008
    What is Chronic Fatigue Syndrome: Brian’s Story & Making the Diagnosis

    Once derided as “the yuppie flu”, Chronic Fatigue Syndrome (CFS) is now recognized as a serious, often disabling, chronic illness which may affect anywhere from 800,000 to 2.2 million Americans. (…

    BPA: Clearing Through the Clutter
    October 1, 2008
    BPA: Clearing Through the Clutter

    There is an intense ongoing debate about the safety of bisphenol –A, or BPA, an ingredient found in many plastic products including many baby bottles and reusable water bottles. BPA acts like a horm…

    Fever Meds
    September 10, 2008
    Fever Meds

    If you want to bring down a fever in a child, is it better to use acetaminophen, ibuprofen, a combination of both, or neither? Acetaminophen works by turning down the body’s thermostat; ibuprofen wo…

    Epsom Salts and Cerebral Palsy
    August 29, 2008
    Epsom Salts and Cerebral Palsy

    Before we talk about Epsom salt baths, here’s the news: giving pregnant women an IV infusion of magnesium sulfate (Epsom salts) cut the risk of their preterm baby developing cerebral palsy by about …

    Marshalling your resources, and a parting thought
    August 8, 2008
    Marshalling your resources, and a parting thought

    When you're facing a harsh disease, use every tool at your disposal. Cancer brings a hefty load of communication. Set up a support community (more…)…

    The importance of your attitude and feelings
    August 7, 2008
    The importance of your attitude and feelings

    A positive attitude is good for your immune system. One nurse in my ACOR peer group wrote, "Patients who are engaged in their care and actively seek out knowledge and the best treatments automatically…

    Understanding the statistics you read
    August 6, 2008
    Understanding the statistics you read

    Statistical analysis is a vital part of good medical research. But it's equally vital that patients and caregivers not get misleading impressions from the numbers they read. (more…)…

    Cancer is no longer a death sentence
    August 5, 2008
    Cancer is no longer a death sentence

    I'd heard a lot about cancer in the news, and I'd known a few people who had it. But when it hit me, the only question that mattered was, am I going to die? (more…)…