Milestones in our timeline
Despite our doubts and despite the doctor’s cautions, we decided to try a strange diet to manage our son’s Crohns. Concerns about giving our son harsh medications from a young age had led us to the Specific Carbohydrate Diet. In order to give the diet a fair chance, we made sure to practice it strictly and consistently and to our amazement we began seeing results. Within a short time, the Crohns symptoms had diminished, lab results had improved and later normalized completely. We even began mentoring other families that were facing similar medical conditions.
As we picked up our son from Camp Oasis we had a long chat with Dr. Ghassan Wahbeh, Director of the Center for Inflammatory Bowel Disease at Seattle Children’s Hospital. Doctor Wahbeh volunteers at camp Oasis every year, alongside other GI doctors and nurses that make this wonderful camp a safe haven for IBD kids. He is also the doctor that performed our son’s scopes, diagnosed Crohns, and allowed us try EEN instead of steroids. At camp the kids love his fun personality, while at the hospital he is a serious and straight forward doctor. He was not content with the improvement in lab markers after seven weeks of EEN, and demanded that we completely eliminate any traces of inflammation. He was thrilled to see our son at camp, healthy and thriving, while maintaining the strict SCD. As we chatted, Dr. Wahbeh mentioned that there was a growing interest in the SCD at the hospital; more parents were asking to try it, and doctors were interested in learning more about the diet. He shared several reasons for the growing interest in the diet:
- The GI team could see how well our son was doing on the diet. In addition, at that point they had a few more patients that had started SCD and were achieving good results.
- The GI department received approval to start a trial of Fecal Microbiata Transplant (FMT) to treat Crohns and UC. There was increased interest in microbiome research and treatments in the medical community, and the SCD clearly tied in with these subjects.
- Doctors sometimes ran out of options when pharmaceutical treatments were not working. There was hope that maybe therapeutic diets like SCD would work in some of these cases, instead of or in parallel to medications.
We had a great talk, and before parting we invited him and the GI staff to come over for an SCD lunch to continue the conversation and learn more about SCD. Between July and September we exchanged emails, trying to coordinate this SCD lunch for a weekend that would work well for everyone – but there was always someone on call at the hospital. Finally, we revised the plan and I was invited to give a presentation on SCD at the hospital.
I delivered a presentation about the basics of SCD to the large GI team at Seattle Children’s Hospital. There were many doctors, nurses, a clinical dietitian and a research expert at the presentation. Dr. David Suskind listened carefully, and asked more questions than anyone else in the room. My husband and son were also in the conference room, and Dr. Suskind was very interested in the perspective of the SCD boy: Is the strict diet hard for you? How do you manage at school? What do you tell your friends? Do you miss old foods? How long will you keep the diet?…
I received a call from Dr. Suskind. He had been intrigued by the presentation and decided to check the records of a handful of patients that were using the SCD by that time. He noticed good results and wanted to take a more in depth look. He asked if we could email him all the lab results we had since the original diagnosis. This phone call is followed by more conversations with him as his interest increases in researching the potential of the SCD as a therapeutic diet for IBD.
A team from SCH (Dr. Suskind, a research coordinator and a clinical dietitian) come to our house to learn how we practice the diet and how we mentor others. They are interested in practical ways to use the diet in the daily life of a child and to teach the diet to other families. This is the first of several follow-up visits as they learn more about the diet. In the coming months we email the GI team lists of SCD resources and write content for the SCD guidebook that Dr. Suskind is planning to assemble for new patients. In parallel, we continue to mentor an increasing number of families that are interested in trying the SCD as a treatment for their child. By then I met with many parents and spent hours on the phone and on emails, answering questions about the use of diet to manage IBD.
The GI team decided that the focus of the 6th annual Symposium on Nutrition and Diet in Inflammatory Bowel Disease at Seattle Children’s Hospital will be dedicated to SCD. I was asked to propose a list of SCD experts and check if they will be able to attend, focusing on experienced SCD mentors that have pediatric experience or geographic activity in the Northwest. It took many weeks to assemble my list and ensure that these experts would be available and willing to travel to Seattle for the symposium.
January 24, 2014
The 6th Annual symposium on Nutrition and Diet in Inflammatory Bowel Disease arrived. It was a milestone in legitimizing the Specific Carbohydrate Diet as an optional treatment for the management of IBD. For the first time ever, medical experts were seated in a conference room, together with SCD experts, and my work was paying off. I am grateful beyond words to the SCD experts that traveled from Canada, Boston, Montana, and around the Northwest, and to the doctors and medical professionals that traveled to participate. Grateful for the many hours of work that the GI staff at SCH invested in preparing this event. Grateful for the opportunity and the potential outcome. That morning I lifted my face towards the skies and thanked Dr. Hass and Elaine Gottschalk for their research and discoveries. Progress was being made today!
The SCD teen and I are traveling to Seattle Children’s Hospital to give a short presentation at the weekly GI team meeting. We shared updates about the growing SCD online scene, as well as new lessons we learned as we continue to mentor a growing number of new families. Our discussions raise two key points: the special challenges of teens in adopting and practicing a restricted diet, and our attempts at perfecting an SCD elemental liquid formula.
Dr. Suskind tells us that his team continues to make progress in assembling their SCD guide for new patients, and asked if I can collect favorite recipes from the growing parent group that we mentor, to add to his guidebook in an effort to create a sense of an SCD parent community. Many parents are happy to learn about the project and some share their original SCD recipes.
Seattle Children’s Hospital and the University Of Washington Medical center are planning a large online SCD survey and I’m asked to review the planned questions and to suggest more questions for the survey. The survey goes live at the end of December and after several months there are over 400 responses. To date, it ends up being the largest SCD survey even done. One more milestone.
April 9, 2016
This symposium for medical professionals marks a new milestone.
April 12, 2016
Dr. Suskind’s new book is available to the general public.
Tali, thank you for shaing your story. Your knowledge helped our family get started 3 years ago on the SCD. Unfortunately, it was not sustainable for us after 7 months when our son elected to stop the diet when he went into remission. We are starting the diet again to help decrease his symptoms. His Crohn’s is in moderate flare. Our son, now 17 years old, has elected to go on the SCD before starting any medicine. The difference this time is, we know more about the social, psychological, and “decreased option” pitfalls of the diet. Being sick with autoimmune diseases since age 8, he could not remember what it was like to feel “naturally” well until we went off all medication when all his diseases were in remission. He now realizes he will be on some form of SCD for life. For long term success on the SCD, we feel that this is the key for to our son’s eventual well being.quistmc@
Thank you for sharing this journeyTali. Your efforts in educating, creating awareness & an incredible support system to families whose children are following SCD has been life giving for us. After our daughter was diagnosed with Crohns in 2014, we felt very alone. Being part of the SCD families group has spurred us on & given us the support to face the hard days. Forever grateful.