I love to hear from new moms! I welcome any new or current moms on the blog to share their stories with us and ANYTHING they would like to share here on the blog. And ask ANY questions you might have!
I had the opportunity to meet Suzanne on the phone today. She shares her daughter’s story with us below. Please comment with your advice to Suzanne! We wish you luck on your new SCD adventure!!! We are here for you!
Mom Suzanne wrote:
My eight-year-old daughter was diagnosed with Crohn’s one week ago following an endoscopy and colonoscopy. We were expecting the diagnosis, as she had anal ulcers in addition to chronic diarrhea and weight loss, and the GI doctor told us that was a typical Crohn’s presentation. Of course we are devastated, and our daughter’s emotional health seems so fragile right now as well as her physical health.
Before the colonoscopy, I had read about the SCD diet through various websites as well as BTVC. My husband and I see the diet as a viable option for at least living with fewer drugs, though of course drug-free would be best. We started her on the diet immediately after getting the diagnosis, and today is day 7. She has already regained the weight she lost from the fast required by the colonoscopy, and from the diarrhea that followed the next day. I see this as a very good sign. Her bowel movements are still very loose but look better in color–not at all watery–and they are holding even at 2-3 a day. She has more energy and her color looks better, but she still has those anemic dark circles under the eyes. She has been taking Flagyl since the colonoscopy. My daughter has also been on Anucort-HC suppositories since the colonoscopy/endoscopy. Those, combined with Manuka Wound Honey, practically healed the anal fissures/ulcers in less than a week, though we are still using them because it is so much easier to have BMs without all that pain–and we are afraid of them coming back! Second, her hemoglobin is 10.2 and her vitamin D is 16, in case anyone has thoughts about supplements.
We met with the GI doc on Tuesday, and she recommends putting our daughter on either Pentassa or 6MP; she actually thinks 6MP is the best choice but is “willing” to start with Pentassa. The disease looks early stage and is limited to the anus/rectum and the terminal ileum. However, the biopsy results showed some granulation which the doc says means the disease is likely working at a deeper level than just the mucosal lining. She was pretty dismissive about both side effects and had never heard of the SCD diet, nor did she think diet could possibly help with the disease process. We are supposed to go back in one week and tell her which medication we want to go with. She says her plan would be to put our daughter on meds through college age, without any attempts to taper or go off them because that would invite the disease back.
We read about the Woodward family’s success with Dr. Benjamin Gold at GI Care for Kids in Atlanta, and are thrilled to find a specialist willing to use the SCD approach alone or in conjunction with drug therapies. Dr. Gold’s office has been closed yesterday and today due to the bad weather, but I will try first thing tomorrow. We are hoping to see him for a second opinion, and hope it doesn’t take two months to get an appointment.
The GI we have seen also wants us to be giving our daughter an iron supplement and all kinds of other supplements, and she was completely irritated at my concerns about the iron, which seems to go against the SCD advice. When I told her I would rather do the homemade yogurt than the probiotics with grain ingredients, she looked at me like I was crazy.
Your blog has been so encouraging! I also would be grateful for any suggestions or thoughts you could offer me while we wait for an appointment with Dr. Gold. We have two other children, close in age, and this has been the hardest thing our family has ever gone through. I know other families experiencing IBD in their kids understand!
With thanks and gratitude,
Mom Suzanne explained to me today that it was explained to her by the doctor that her daughter was in early stages and does not have a severe case of Crohn’s. Her daughter’s doctor is recommending medication. When we were talking today I told her I strongly recommend from my experience and from learning from other moms here on the blog to try the diet first before turning to medications. I told her to be expecting and looking for her daughter to start feeling sluggish at the 2 week mark of starting the diet and for the “dying off” stage. I encouraged her to try to stick to the diet strictly at least 3 months and that it WILL get easier!!!
Suzanne is looking forward to hearing from you moms. What is your advice and experience?