Just Diagnosed- Now What? Where To Turn For Reliable Research and Advice, by Heidi Barrett
Updated: May 9, 2020
The bright sun shone in the winter sky when I pulled the van over to take the phone call from our pediatrician. It is never a good sign when the doctor calls you personally to break the news. Our youngest son Liam had Juvenile Arthritis (JA). In the moment I felt relief that we finally had an answer to what was making our youngest so sick, but looming in the back of my head was the question, "Now what?"
Our appointment with a Pediatric Rheumatologist was weeks away so late that evening, I turned to Dr. Google to help explain to me Liam’s diagnosis. Less than a minute later I discovered it was my fault that Liam had JA. It was not quite clear why I was at fault. There was lots of conflicting information on the internet. I might have done something wrong in my pregnancy, or maybe I did not do something. Maybe it was that cup of coffee I drank in my third trimester that gave me the jitters? Oh wait, that wasn’t right. It must have been caused by Liam’s first foods he ate. Everyone knows the first food a baby eats needs to be microgreens harvested by the light of a full moon from a field that man has never touched before. Here I thought with baby number 4, I knew what I was doing. Instead I learned it was my parenting skills that had brought an autoimmune disease on my 5-year-old.
Thankfully, Dr. Google was right by my side telling me how to make it right. I just needed to wrap Liam’s joints in cabbage 24/7 for the rest of his life. Liam should also only partake in cherry juice. I felt bad enough knowing that the genes I passed on to Liam played a
role in his JA. I certainly did not need the internet laying on more guilt and blaming my parenting choices. What exactly was I to do?
Fortunately our government has set specific guidelines for what qualifies as sound medical advice. Liam’s care is based on medical evidence, which includes systematic review, randomized controlled studies, cohort studies, case-control studies, outcome research and expert opinion (based on the aforementioned studies). Did you squeak by with barely a passing grade in high school science? Never fear; that double-edged sword the internet is here to the rescue. The following websites offer scientific research and facts on various health, nutrition, and drugs.
MEDLINEPLUS - an easy to read site with up to date trusted information on health and wellness
MEDSCAPE - the latest medical news, clinical trial coverage, drug updates and journal articles
SCIENCE DAILY - current breaking news in science, health and mind and body
PUBMED - a free search engine accessing primarily MEDLINE database of references, life sciences, and biomedical topics
COCHRANE LIBRARY - six databases available housing a collection of high quality-independent evidence to inform health care decision making
DAILY MED - a database listing over a hundred thousand drugs submitted to the FDA
NCCIH HEALTH - information on complementary health approach and practices
Most of the websites are easy to use and very straight forward. If you come across an article that you do not have access to, most researchers are more than happy to email a copy of the abstract or the whole article.
I lost control over my family when Liam was diagnosed with Juvenile Arthritis. Over the next four years, three more of our children would be diagnosed with the same disease. Our family struggled with shot night, and the tips we were given by other families going through the same thing was invaluable, thus we learned first hand the time for ancedotal evidence. But it was having access to scientific research and facts that really brought a sense of control back into our lives. We had no idea where this disease was going to take us, but we had the basics down. When somebody suggested we try elderberry juice to boost the kids' immune system, I knew that advice was 100 percent incorrect for us thanks to NCCIH HEALTH. Having juvenile arthritis means the immune system is in overdrive and attacking the body. Since elderberry juice helps boost the immune system we would be actually making the symptoms worse, not better, by boosting the immune system.
Fear of the unknown is very real for Liam, but I rest a bit easier and thank
God that I've been able to find reliable facts and information that offer hope for our family.