Ignored at a Support Group for Saying a Word!? (Nutrition)!


In the year following my daughter’s diagnosis of Crohns disease also called Inflammatory Bowel Disease (IBD), we had a surprising experience! As a mother of a child with a chronic illness the first thing I did was try to educate myself as much as possible. Twelve years ago, when my child was diagnosed with this debilitating illness, I searched the internet to learn all I could about IBD. The next thing I did was join IBD organizations to learn and show my support to find a cure!

My daughter, Jordyn was 12 years old at the time she was diagnosed. Her symptoms were chronic abdominal pain, diarrhea, bloating, gas attacks, vomiting, fevers, skin rashes, anemia, joint pain, and indolent sores in her mouth. She had lost 30 pounds in 6 months and had stopped growing resulting in a 2-year growth delay as well as a failure of normal teeth development.

At the beginning of treatment, she was prescribed steroids and chemotherapy medication that she willingly took for one year, despite the fact that she showed no improvement at all. Her condition worsened, and, to make matters worse, her hair began to fall out. She had missed 60 days of school and was now becoming reclusive.

Jordyn had been admitted to the hospital several times for dehydration and after her last hospitalization she was recommended to a clinical nutritionist, Dr. Melvyn Grovit. Dr. Grovit was keenly aware of Jordyn’s plight, as he himself had experienced the ravages of Crohns disease as a child. Dr. Grovit had developed a nutrition protocol over the past 30 years and introduced it to Jordyn. Dr. Grovit then teamed up with Dr. Alfred Slonim, Jordyn’s endocrinologist, who had also been working with Crohns disease patients from a growth factor perspective. Together they forged a team approach to Jordyn’s medical nutrition and growth factor needs. The nutrition protocol was easy to follow and is tailored to the individual’s needs and personal food idiosyncrasies. After beginning the diet and nutraceuticals, Jordyn gained 8 pounds in 10 days, became energetic again and began to rapidly return to her happy self. Her orthodontist could not believe what he was seeing as all of Jordyn’s missing teeth spontaneously came in after several weeks on the nutrition protocol. On the nutrition protocol alone, Jordyn grew 5 inches in the first year. In the second year, Dr. Slonim felt that her growth chart reflected a plateau and it was now time to introduce growth factor therapy in conjunction with the nutrition protocol. Jordyn noticed even more energy and an increased sense of well-being. In that second year she grew an additional 4.5 inches.

Having achieved such wonderful results from medical nutrition we wanted to share our good fortune with everyone! My husband and I put together a presentation to share with the executive board of an organization the night before their support group meeting. We thought it was well received and left feeling positive we could help many children. The next night my daughter and I attended their support meeting. The evening starts with a meet and greet and then separating into groups for adults and children. I was so excited to share our news and felt the board was supportive!

I watched as they conducted business as usual and was waiting for my turn to speak. No mention or invitation was presented, instead we were allowed to network with other parents. A father standing next to me started the conversation, asking if my child had IBD and what was I doing? My opportunity arrived at last or so I thought! I started to tell Jordyn’s story and mentioned the word, “Nutrition”!! Suddenly, the board president steps between us and says to me “We know your story!” He turns his back on me and cuts off my conversation! Okay, I think let’s try this again, so another parent approaches and it happens again!! Wait a minute “Am I Being Shut UP!” or ignored? It happened throughout the evening and I could not believe this was occurring. At the end of the meeting I pick up Jordyn and she is not happy either. We leave and get in the car and I ask her “How was your meeting?” She proceeds to look at me and says “have you ever felt like an alien?” It was that good!

She tells me all the children sit in a circle and go around telling what illness and drugs they are taking. After each child shares they applaud each other. For instance, I have Crohns disease and take steroids and chemotherapy then applause! Finally my daughter’s turn comes and she says “I have IBD and have gained 30 pounds using medical nutrition!” DEAD SILENCE follows no applause! Five seconds later every child is asking questions all at once! The adult leader cuts Jordyn off before she can share and says “We will not be discussing that and lets move right along!”

On the ride home Jordyn asks me to never take her to a group like that again. She says “Mom, don’t they want to learn about nutrition to help this disease?” I tell her I would think so. We get home and share our experience with my husband. I always thought why reinvent the wheel if you don’t have too! But, sometimes you find yourself on a different path and have no other choice. Instead we decided to establish our own non-profit charity, The Foundation for Nutrition and Inflammatory Bowel Diseases in Children, Inc. (NIBD) www.nibdinkids.com. Sometimes you just have to think outside the box to inspire change!

If you would like to learn more about NIBD and Jordyn’s story please check out our website www.nibdinkids.com .

Nutrition First in 2013!

Lenore Shapiro

President

NIBD 516-380-0076

  • More NIBD Stories