When Mac was first diagnosed I must have spent hundreds hours searching for information. Convinced that he still had some functioning cells left in his pancreas, I was certain that I could find someone who would show us how to save them and keep them functioning somehow.
I believe in the healing power of food and thought that if I could find the right combinations of food: super foods, complex carbs, whole foods, supplements, I could help him fight this disease from the inside.
The problem with the dietary plans that I found was firstly, they were for Type 2 diabetes and secondly for Type 1 but then not geared towards infants. I was seeking out ways to support Mac and his body as he was growing, developing and dealing with this disease but I could find next to nothing to help me.
We have amazing support from Sick Kids Hospital, where we have a team of endocrinologists, nurses, dieticians and counsellors, but the dieticians base their recommendations off of the Canada Food Guide and I was not interested in feeding Mac that way even before the diagnosis. We were at a loss and afraid of damaging our son’s development.
Feeling strongly that we were not helping him by feeding him a high carbohydrate diet, and just matching with insulin, we were unsure if we were doing it safely. We finally found a naturopath in Arizona that specializes in infants and Type 1 diabetes. So not long after Mac was diagnosed we decided to fly there to get help.
Dr Mona Morstein was amazing and provided us with the confidence to treat Mac with a holistic low carb diet and simple supplementation (Multivitamin in addition to the fish oil and Vitamin D we were already giving him) until we could get his blood glucose levels in check. Once we saw his levels come more into range we could then start introducing more grains back into his diet to see how he reacted.
In those early days, desperate to save his pancreas and the last remaining functioning cells, I emailed as many scientists as I could find that were leading Type 1 diabetes research. I found a local scientist Dr Michael Hans Dosch, who in the early 2000’s found a cure for T1D in mice.
Dr Dosch was starting a clinical trial in May, 2016 and while Mac was too young (no research is allowed on children under 10), he mentioned that we should avoid cow milk products, formulas (except Nutramigen TM and Alimentum both “highly hydrolyzed”) and to stay away from soy. You’ll have to read and decide yourself on those, we just avoided them to be safe, though our damage was already done.
Dr Dosch clinical trial is well underway and we will meet with him soon to get Mac to get a “buccal” swab to sequence his TRPV1 gene – stay tuned for an update on that.
Doug Melton, from Harvard Stem Cell Institute and father of two T1D sons – leading stem cell research for T1D