I'm writing this blog hoping that maybe someone who reads this knows someone or has heard of someone having similar issues so that we can find a cure, treatment, something, to help my precious boy. If you have been around us very for long, you quickly find out about Trenton's digestive issues....
It started about 2 weeks after his first birthday...diarrhea, lovely! Being the calm, let's not overreact, kind of Mommy that I am, I watched him closely, stocked up on pedialyte, diaper rash cream, bland foods and gave lots of love. After almost a week of this I called the Pediatrician, they said wait a few more days, (no fever was involved) and let the "virus" run it's course. Went to the Ped several days later after no change in his condition.... Long, very long, story made short...we're still having diarrhea! TWO YEARS LATER!
Here are a few more details... First we tried the BRAT diet, he got a little better, something like 3/day rather than 7/day....then it flared up again. BRAT diet again (+ antibiotic-just in case we were missing something), but this time after several weeks on the diet and significant weight loss (for someone weighing only 25{ish} pounds, off the diet, referral to a Pediatric GI Specialist. After several visits to the GI doc, blood test, diet changes, but still no real change in the digestive issues, the doctor suggests an upper endoscopy and colonoscopy and they were going to take biopsies all the way down his esophagus, some from his stomach and some from his intestine. I'm sure it was waaaaay, more traumatic for me than him, but poor little guy! It's very hard to tell your 15 month old he can't eat for 24+ hours!!! Then to try and "clean him out"....we'll just leave it at that ;)
The colonoscopy showed some abnormal tissue and we were glad to hear it. We needed an answer! They wouldn't know anything for sure until they looked at everything under the microscope and ran some tests on the biopsies. My heart sunk when they told us the biopsies were inconclusive...meaning they didn't show any allergies or genetic problems...I mean I was truly thankful nothing major was found ( I was sitting outside Mark's hospital room the day before his open heart surgery when they called, and didn't need anything serious ), but I was sad that we were back at the starting line again.
Our last visit to the GI doc was just a few weeks ago. The doctor (who we love, trust and feel is really great) said, he doesn't see anything that leads him to believe there is any type of disease in his body just and extremely severe case of toddler diarrhea. He said probably have another year of this (if it is what he thinks it is).
So, basically, on an average day, he is having 3-4 poops a day. He's never had a solid poop in his life - he's 3 years old. He gets what we just call "flare ups" where he will have 7-8 poops a day. His worst day was 2 weeks ago with 11 in just 24 hours. He is gaining weight at a slightly slower but close to fairly normal rate now. The doctor has us giving him benefiber, but in really high doses along with a probiotic every day. We have really increase this lately, but aren't seeing the results that we should or that the doctor expected. He also asked us to keep his diet high in fiber and fat (although T's Pediatrician wants us to really watch his fat because of the genetics of heart disease in our family). He is off of milk (lactose) and sugar. The milk is not so hard, but the sugar...it's in EVERYTHING!!
Up until now, Trenton hasn't even known or had any reason to think that what happens is not normal. I feel terrible for saying this, I guess selfish or whiney, but it is exhausting cleaning up after the mess and potty training has been a nightmare because of the diarrhea. Unfortunately, I think we have opened his eyes to the fact that this is not normal. We have had to resort to pull-ups (totally damaging his excellent potty skills-he was doing great, with TT, but the other comes so quickly...) because I felt nervous going out, there was always a mess!
Almost any given day involves, a couple of changes of clothes, an extra bath or two, and often a mess on the floor, carpet, high chair or car seat. I hope I don't seem upset or selfish about this...there are days when I do feel a bit overwhelmed by the mess but overall, I want to find what is causing this. So far, here are the things we think we've ruled out: milk, red dye, the inability to break down sugar, & glutens. I am trying to get him scheduled for allergy testing just to make sure there isn't something we're missing.
Please pray with us, for us & for his doctor, that we will figure this thing out! If you have any insight that may help us please feel free to pass that along to us~
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