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A Child's Suffering Drives A Mother To Seek Untested Treatments

Your child is diagnosed with a serious autoimmune disease and conventional treatments aren't proving to be effective. Doctors prescribe powerful medications that don't seem to work. Not only is your child not responding as hoped, he's withering from the side effects. What do you do? Journalist Susannah Meadows found herself having to answer this question when her son, Shepherd, was diagnosed at age 3 with juvenile idiopathic arthritis, joint inflammation that can last a lifetime.

When the drugs didn't work, Meadows was persuaded to look at his condition through a different prism and to consider the possibility that medications might not be the only answer. Meadows began speaking to parents who had sleuthed out alternative theories and tried things like radically changing their kids' diets and giving them Chinese herbal medicines. Like many parents of sick children, Meadows grew increasingly willing to venture outside of the standard treatments.

Her experiences spurred her to seek other stories of people with illnesses ranging from multiple sclerosis to epilepsy to ADHD who pursued unproven methods of treating their diseases. Their stories, as well as an account of her son's case, are compiled in The Other Side of Impossible: Ordinary People Who Faced Daunting Medical Challenges and Refused to Give Up, published Tuesday by Random House.

Shots sat down with Meadows to discuss her book. The interview has been edited for length and clarity.

When Shepherd was diagnosed with a case of juvenile idiopathic arthritis, were you initially uncomfortable with him taking the standard drugs for the disease?

I was very comfortable when the first thing he was prescribed was naproxen, because that was familiar as a relative of ibuprofen. But when that didn't work and he was prescribed an immunosuppressant [methotrexate], I was troubled by the risks. It's a serious drug and it comes with an increased risk of lymphoma and liver disease and for sure, I was very uncomfortable with that.

And then in the immediate sense, taking the drug made him sick and he spent days on the couch, nauseous every week, and to me, that was an unacceptable life. I could not accept that that was going to be his life. I think the thing that really pushed me to explore other options was desperation.

In addition to keeping him on the methotrexate, we took gluten, dairy and sugar out of his diet. We gave him high doses of omega-3s in fish oil and a probiotic. His arthritis started to get better six weeks to the day after we started the new diet, and we weaned him off the methotrexate. He's now totally healthy, completely without pain, and has been off all arthritis medications for four years. It's impossible to know what made him better, but there's some science that suggests it could have been the diet.

Your book is a call to arms to think about diet and what we put in our bodies, whether you have serious illness or not. How did food play in the recovery of the people you wrote about?

Terry Wahls [had] multiple sclerosis and went from using a wheelchair to riding a bike again after she radically changed her diet to eat only nutritionally dense food. You can't come away without thinking, if that can do that for her, what could it do for me?

The pioneers in your book weren't the trained scientists or the doctors. They were the patients. What can you say about that?

Certainly doctors know more about disease than I ever will, but that doesn't mean that their expertise is universal. Our own doctor was a good partner in our weighing things to try. We were able to have good conversations about risk, and what I liked about him was his openness — he made it clear to us that he didn't have to understand it if it worked, which to me is a great quality in a doctor. The best doctors recognize that they don't know everything.

Some key themes emerge in the book about the personality traits of those who seek different avenues of treatment. What are they?

One of the things that struck me about everybody in the book was extraordinary self-confidence, almost a stubbornness that they would find an answer. These people exhausted medicine's answers and kept looking. Another thing was hope. I used to think of hope as being about the known possibility. You could have hope if even 1 out of 100 people got better. But what was amazing about these people was that they had hope even without an example of one. There was nothing to point to. A woman with multiple sclerosis who's using a wheelchair, it's unheard of to come back from that. And yet she believed she could find a solution for herself. And to me that's extraordinary.

It seemed like many of the subjects of your book were financially comfortable, which gave them advantages such as moving across the country to be near a practitioner. How can people access experimental diets, supplements or interventions not covered by insurance?

To be sure, having resources helps, but one of the things that's so exciting about food being a potential solution for some diseases is that it's a lot cheaper than medication. Some medications for multiple sclerosis, for example, can be $80,000 a year. We have strong anecdotal evidence and in some cases, clinical evidence that food can improve symptoms for some chronic disease. The other virtue of food is that it's open to all of us to experiment with. Until we have the data to say this diet will benefit this disease, we are free to see as individuals what might help us.

Finally, how has the experience of dealing with your son's illness as well as meeting these other like-minded people changed you as a parent and as a person?

The biggest thing that I have learned is that when it seems as if there are no options, you can still look for them and maybe find them. That you have a choice to keep going when others say that you can't. I don't think I had that feeling when Shepherd was diagnosed, but I think his unlikely recovery taught me that.

Heather Won Tesoriero is a writer living in New York City. She's currently working on a narrative nonfiction book. The Class will be published in 2018 by Ballantine Books.

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

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