Support for IBD Parents in the Midwest

“At our local children’s hospital here in the Midwest, requests from parents for a mentor with diet and nutrition experience are ever increasing. It is my hope that our medical personnel will eventually acknowledge the need for alternative treatment options for IBD. I am happy to provide support and encouragement to families just like us, who continue to persevere daily, keeping our eyes on the goal of helping our kids live their best life”. 

My name is Stephanie. I live with my family in the Midwest. Our son Isaac was diagnosed at the age of 10 with juvenile arthritis and a week before his 13th birthday was diagnosed with Crohn’s Disease. We immediately began researching alternative treatments with the hope of having to avoid the need for harsher medications. We started the Specific Carbohydrate Diet on Memorial Weekend in 2012. I was overwhelmed at first and eventually reached out to the creator of a webpage for the SCD. This wonderful women was a Godsend and she knew Elaine Gottschall personally. With her gentle guidance, we stayed the course and our son was in remission in a few months.

In early 2013, I joined a small group of parents who were interested in providing support to other families with IBD at the children’s hospital. Our first project was that of a patient binder chocked full of information about IBD, helpful notes and tips, and resources. Distribution of the binders in the clinic came to fruition in early 2014. At the same time, we were providing direct support through mentoring parents interested in receiving personal support. We created a training program for new volunteers and in mid-2014, held our first training session and acquired several parents who were interested in giving back. We began to mentor parents in clinic as well. In early 2015, a grant we applied for was approved. The grant allows us to distribute Buzzy Bee, a pain management tool that distracts from the pain of an injection, to all patients receiving medication injections at their homes as well as infusions free of charge. Our current projects include building an ongoing fundraising page to help provide additional distraction items for our IBD kids in the infusion room, developing a peer mentor group, and continuing to create awareness about IBD. Our group is active on the hospital’s Family Advisory Council as well. It is humbling to be part of this group as it allows us to serve in a way that brings something positive from a devastating diagnosis.

In mid-2014, I found myself in need of a little reassurance and encouragement, specifically with diet and nutrition, during a setback that Isaac was having. I stumbled across the SCD Families FB page. What a small world our world instantly became. Over time, I have been in contact with wonderful people on the west coast who have the blessing of working with medical personnel who not only support the SCD, but believe in its ability to aide in healing the gut. At our local children’s hospital here in the Midwest, requests from parents for a mentor with diet and nutrition experience are ever increasing. It is my hope that our medical personnel will eventually acknowledge the need for alternative treatment options. I am happy to provide support and encouragement to families just like us who continue to persevere daily, keeping our eyes on the goal of helping our kids live their best life.

I can be reached by email at mygrandmotherskitchen@yahoo.com

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3 Comments

  1. hi, do you have a resource for a supportive GI doctor in St. Louis, Missouri?
    thank you

    • Hi Liz,
      I’m sorry it took so long to reply. I didn’t get a notification about your message and just happened to see it today. Are you on Facebook by chance? There are two support groups that are incredibly helpful when on the SCD. One is called SCD Families and the other is SCD Group. Both groups keep a file of SCD supportive doctors and other helpful resources. I can look and see about a supportive GI doc near St. Louis for you.
      Thanks!
      Stephanie

  2. thanks stephanie, I just joined those FB groups, thanks for the recommendation. as far as I can tell so far, there’s no traditional GI in STL that supports SCD.

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