Joining SCD Families

SCD Families is only open to parents of children and teens with IBD. The goal of this group is to share information, tips and experiences relevant to parents maintaining or wishing to learn about using the Specific Carbohydrate Diet (SDC) as nutritional therapy to manage IBD.

The background story of SCD Families can be found here.

How can parents join the group?

We only serve parents of children that have a medical diagnosis of IBD, and we screen all applicants. On Facebook, search for the group SCD Families, and click on the ‘join’ button. Please NOTE: there are several different SCD groups on Facebook. Make sure you are linking to SCD Families. After requesting to join the group please look for, and respond to, a FB message from us. Sometimes Facebook will route our message to your folder named “other”. You must reply to the inquiry in our message in order to be admitted to the group!

Why we don’t allow others to join the group?

The single most difficult thing for me to do is to decline a request by those who could clearly benefit from SCD support, but are not the parents of a child with IBD. We get requests to join by many deserving people. For example: parents of kids with IBS or kids on the autism spectrum, who use SCD and seek community support. Unfortunately, they cannot join our group. The reason is that IBD has different sets of symptoms, risks, medications, and challenges. Parents are served best when discussions are focused specifically on their unique needs and challenges. We are good at what we do because we stay focused on our core mission: supporting IBD parents.

If you are not a parent of a child with IBD, please other SCD groups on FB that are able to serve you better.

Are medical professionals allowed to join the group?

We do have in the group many doctors and nurses who happened to be the parents of a children with IBD. In parallel, we receive requests from medical professionals who ask to join the group in order to learn about SCD so that they can provide better support to their patients who are interested in SCD. We admire each medical professional who is being so proactive and supportive, and we try to serve them in other venues, such as answering their questions by email, and publishing information on the Gut Harmony site and Gut Harmony Facebook page. We also always remind them of the NiMBAL web site as the primary source for medical professionals.

Early on, when we started the group, it became clear that we needed to keep SCD families a ‘parent only’ group. It is important for parents to present a dignified and calm façade when talking with their medical team, but parents also need a safe place where they don’t have to worry about their image. They need a safe place where they can fall apart emotionally for a brief moment, ask weird questions, show weakness during hard or frustrating times, expose parts of their lives that they are only comfortable sharing with peer parents who will have the deepest understanding for such situations. For this reason we have made the hard decision to keep the group a parent only zone.

Does SCD Families provide medical advice?

No, we never provide medical advice. SCD families is a support group. At times parents do share their personal experience with different treatment options, but this is in the form of informative discussions, and with clear understanding that each child responds differently to each treatment. We make it abundantly clear that group discussions should never replace medical guidance. We work IN CONJUNCTION with the medical GI teams, to provide parents optimal support.

We are a family friendly page.

We keep our comments and posts polite and considerate. To respect the privacy concerns of parents and their children, we do not share content posted in this group anywhere else! We reserve the right to remove anyone violating the guidelines or the spirit of SCD Families from the group. Commercial solicitations of products and services are not acceptable in this group. Such posts may be deleted. Members abusing this policy may be removed from the group.

For those who are ineligible to participate in SCD Families, here are a few other helpful resources:

Our group is only focused on SCD for treating pediatric IBD. Since the symptoms and treatments are very different - we cannot be as helpful in treating other GI condition conditions. Please consider joining the FB group named SCD Group - as they have wider topic discussions.

Additional resources can be found in this list.

Special resources for families who use SCD as diet therapy for autistic children:

The SCD for Autism and ADHD: A Reference and Dairy-Free Cookbook for the Specific Carbohydrate Diet by Raman Prasad, Pamela Ferro and Nilou Moochhala.
Pecan Bread website ASD & SCD Why Parents Call SCD the Miracle Diet
SCD and Autism
Autism & Diet

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