I felt compelled to donate to SCD research as a prayer for my boy, a token of appreciation for Dr. Suskind, and as symbol of solidarity with other families dealing with IBD

Guest post by Missy Ketchum

The kitchen where I prepare just about everything my 16 year old son eats is on the eastern coast of Florida, not far from the Atlantic Ocean. Each weekend I have a list of no fewer than 20 dishes that I prepare from scratch—pancakes, condiments, treats, entrees, roasts for sandwiches on breads I make from almond flour. My son has Crohn’s disease, and for the forseeable future, he will not be eating anything considered convenient. Does this sound like punishment? It depends on your definition.

Punishment was seeing my son waste away before our eyes, dropping nearly 20 pounds over the course of two months, having bloody bowel movements 10 times a day, abdominal pain and ghostly gray circles under his eyes. The prospect of “having fun being a teenager” seemed like a cruel joke. When we got the diagnosis that he has a lifelong incurable autoimmune disease, his doctors told me to familiarize myself with the categories of medicines that treat but do not cure this illness. Success rates were vague; individual results varied.

The doctors gave me some brochures and handouts and directed me to the Crohn’s and Colitis Foundation website for more details. A hospital social worker summoned me to meet with her in the “parent conference room” where she gave me information entitled “For Parents of Chronically Ill, Medically Complex Children.” I was desperate for answers and read everything multiple times.

Out in the Googlesphere, I discovered the Specific Carbohydrate Diet. In contrast to the information given to me by the doctors, the word about the SCD was that it could help patients with Crohn’s regain their health. I have always been a little skeptical when people say that they drink vinegar or follow food-combining or have some other alternative diet—was this another example? The difference with the SCD is that no one claimed that it worked for everyone—not even the diet’s chief proponent, Elaine Gottschall. It was offered as a therapy, something that many people tried as a last resort and found that it helped, sometimes a little, sometimes miraculously.

On Amazon I found a couple of cookbooks and a book called NIMBAL by Dr. David Suskind of Seattle Children’s Hospital. I was grateful that this dietary approach had the backing of a physician affiliated with a major hospital, and I took the book to my first appointment with my son’s dietitian.

Her reaction when I held up the NIMBAL book made me think that she was furtively reaching for a buzzer beneath her desk that alerted others in the office that “here’s another one thinking diet will fix it.” On some level, I understand the reluctance. I work at a 6-12 school where we have a robust science research department. Our students are taught from their earliest experience in science labs about the scientific method and the burden of scientific proof. The medical field rests on this foundation, and I am thankful for this protection.

But the fact that the SCD has not been researched extensively means that most physicians will not recommend it. What is currently considered acceptable practice in treating IBD is peer regulated, as it should be. But the pace of progress can seem oceanic, and the results of the current studies on the SCD will take years to make their way into mainstream medical practices. For now, many parents find out about it by doing research online, and if they embark on the diet, far too many do so without the guidance or support of their doctors.

In the meantime, facebook pages, list serves, websites and blogs about SCD abound, and that is where parents seeking help for their children go. Like all things on the internet, there is a lot of questionable and even bad information out there about the SCD. There are also knowledgeable people willing to help, because all of us know how terrifying this disease is and how lonely it is to lie awake consumed with fear for your child.

The only people missing from these internet resources are, notably, physicians.

That is, until Dr. Suskind decided to put the information about the SCD into the hands of parents who are desperate for solutions that don’t require immune altering drugs and the increased risk of cancer. The NIMBAL website is an online version of the book I read, and what parents hope is that this will open the floodgates of research on the SCD, and at the very least, make the SCD the first thing parents hear about when they get the whammy of a diagnosis that their child has inflammatory bowel disease. If the SCD is helping kids, my view is that GI practices should tell parents that SCD might help. No one will claim that the SCD will heal or help every single person who tries it. But surely telling parents that the SCD has helped many children and adults meets the standard of “first do no harm.”

In my kitchen in Florida, I decided that I wanted to encourage Dr. Suskind and the physicians at Seattle Children’s Hospital. Geographically, I could not be farther away from SCH. But I wanted to support their GI team for doing what in my view amounts to sticking their necks out. So I got on the Seattle Children’s Hospital website and gave $500 to support Dr. Suskind’s research. This is not a difference-making amount, I know. It’s a meaningful amount to me, though, and I gave it almost as a prayer that his work might really be onto something. I gave it in solidarity with other families dealing with IBD. And I gave it because I love, desperately love, my boy who has this degrading and vicious illness.

For the record, my son is doing well on the SCD. He is also on medication, which I hope will induce a remission that the SCD can help him maintain. The diet is rigorous and a lot of work, yes. But if it contributes in any way to my son’s healing, then I will in turn contribute, in as many ways as I can.