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Mom Looks Beyond Modern Medicine To Help Her Young Son With Crippling Arthritis

May 3, 2017 2:28 p.m.

No Cure In Sight, Determination Led Mom To Look Outside Of Modern Medicine To Help Son, And It Worked

GUEST:

Susannah Meadows, author, "The Other Side of Impossible, Ordinary People Who Faced Daunting Medical Challenges and Refused To Give Up."

Related Story: Mom Looks Beyond Modern Medicine To Help Her Young Son With Crippling Arthritis

Transcript:

This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

The other side of impossible. Here is our story.
This book grew out of your own family's experience. Will you share your son, shepherds story with us?
Yes. When he was three years old he was diagnosed with juvenile arthritis. I had never heard of that. It causes painful inflammation in the joints and can lead to stunted growth, disability and in rare cases blindness. We were told that he would struggle with this for his whole life. We started him on medication that did little to help his pain. The real trouble with it for me, was it made him sick as I watched him lie on the couch, nauseous for several days after taking his pills every week, I could not accept that this was going to be his life. I was a desperate mother. We ended up trying an experiment with his diet that we had heard from another mom might help. We talked it over with our Doctor to way the risks and gave it a shot. Then, we were stunned when Six weeks later, to the day after starting this, he got up from bed one morning and said mommy my knees don't hurt anymore. That was the beginning for us. Within several months, all of his arthritis was gone.
This is really hard on your family, isn't that right?
It was. One of the reasons I wanted to write the book was because until you go through having an illness in the family, it is impossible to understand how difficult it is and transformative it is. And how hard it is to maintain hope especially when you are told that your child will have this for life so I want to show what that experience was like and also, I think that by sharing stories, or I hope that by sharing stories of what other families have gone through, people out there who are struggling can feel less isolated and maybe draw some hope from the stories.
You found a group of people, they are all women who went through something kind of similar to you. I'm wondering if you can tell us who they are. Some of the stories and people you met along the way.
I'd love to. I first wrote about my son several years ago in the New York Times Magazine. As I was working on that, I reached out to researchers and scientists and doctors and asked them if there was any science that could explain why a change in diet could help them get better. As I was talking to these people I started hearing things. For example, there was an NIH researcher who I was interviewing about the bacteria in our bodies. She said you should talk to my sister-in-law she has been through something similar. I reached out to them. They live on a farm in Washington state and spent seven years struggling to help their daughter who had autistic traits and epilepsy. There is another story, it was a farmer who said have you ever heard of Terry walls? I looked her up. She also has her own chapter in the book. She is a woman with MS. Shoes using a wheelchair. She took it upon herself to find an answer for herself. That is unheard of. Medicine could no longer help her and typically you just don't come back from that advanced stage. She did her own research and logged on to the national Institute of health database. She came up with a plan for herself based on research she found. She now rides a bike work when I heard her story, I thought oh my gosh, how has no one told the story likes I got on a plane to go meet her. The people that I write about, I just had to write about because -- here's the thing that amazed me. They were facing diseases that you don't come back from and yet they still had hope. I used to think of hope as you would need an example of one. Somebody would have to bash there would be some example so that you could look to that person but these people did not. There was no reason for them to think that they could find answers for their illnesses. Than I did.
I read a couple times in the book when you spoke to doctors, their own recommendations for treatment might actually differ from what they would do if their own child was sick as long as it was not causing harm. Can you talk about that?
When I called Doctor Alysia who is a silly act researcher, I said to him we took gluten and dairy out of our sons diet and he recovered. Does that make any sense to you? He said that makes perfect sense. We see that a lot. He went on to say that probably 15 to 20% of kids with juvenile arthritis would recover if they took gluten out of their diet and.
So I said do you recommend I figure patients?
He said no because we a certain percentage will get better. I said while that is the difference between you and me. As a parent, if there is a 5% chance and the risks are low, I'm going to take that chance. He said well. I speaking as a scientist. As a father, I absolutely would give it a shot. There is no harm.
That is the sort of understanding that I think it is helpful to have. There is being a doctor and giving scientifically based advice that is backed by clinical trials which is the standard that doctors are held to and should be and then there is this other world of things where there may be some clinical evidence but not a lot or antidotal evidence that is pretty compelling but it is not risky to try. That is where the stories in this book live. It is a gray area. There is not enough science yet but there is some suggestive evidence that is compelling and that we might want to way. The fact is, if you're facing a disease that does not have a cure, do you want to wait for decades before we get the science nailed them? When you are in that position and you are looking at is sick, the couch, it is very easy to answer that question.
How is Sheppard doing now?
Sheppard is great. He is nine years old. He is a regular, wisecracking 9-year-old who is very quick to challenge you to a running race and then rub it in when he wins.
It has been five years since he recovered and more than four years since he has been off medication. When he moves around I am always feeling blessed and lucky that we found an answer for him.
Join us again tomorrow for KPBS Midday Edition tomorrow at noon. thank you for listening.