Father of 12yo boy w/ UC diagnosed May 2013. Been through the normal diagnostic regimes. On 5-ASA meds now and having to consider if next steps to immuno-suppressants will be necessary. Looking for advice from parents of kids with UC on how to approach therapeutic alternatives.
My Son Has Ulcerative Colitis
Hi … I’m father of 12yo boy diagnosed with UC in May 2013.
We are at point in treatment where it appears 6-MP and Biologics are proposed next options. He has been symptomatic (4-8 diarrhea stools per day) for last 6 months and has lost about 10% of body weight in that time. Not enthused about potential side effects or long term implications of the 6-MP or Biologic therapy. Currently using Asacol (50 mg/kg) and Canasa suppository daily but with results noted above. GI doc is OK w/r to any other therapeutic approaches such as TCM and SCD as long as we are attentive to his reactions. GI doc categorized his UC at this point as “moderate” but at this level vs other diagnostic guidance, I would say moderate is being generous. Currently increasing Asacol and Canasa to maximum the GI doc thinks is safe to try to see if it can shift to remission.
Trying to figure out if some approach to SCD would be worth trying before other choices, but having difficulty figuring out how to get a 12yo to buy-in to diet restrictions. Early on we tried strict SCD but only survived about 3 days on SCD protocol before stress/revolt took over. Family stress on what to eat is through the roof on most days.
Really would use some advice on how to help move diet in a direction that might show some benefit so that he could see for himself that he has path to help control his symptoms. Hoping that some others on this site have experienced similar and can related to us how they coped. As a family we’ve tried to eat healthy (organic, whole food, less processed), but obviously not in a manner that will work for a child with UC.
How have parents dealt with what to send for lunch to school? What are potential afternoon snacks that are not carbohydrate and sugar based that could appeal to a 12yo boy? Hates carrots … are the other options that might fit the SCD needs but potentially appeal more?
Also considering if Probiotics would be of benefit in helping induce remission or moderate symptoms. Considering VSL#3 and Renew Life Ultimate Flora.
Any advice or experience you can relate on this is much appreciated.
Father of 12yo boy w/ UC diagnosed May 2013.