Updated: Jun 1, 2020
Three years ago this month Conner came down with what we thought was just a stomach bug. But when it hadn’t gone away after a week - or two - we went to the pediatrician to see if they could figure out what was going on. They ran lots of tests and couldn’t figure anything out. We asked them to check for all the weird things we had read, heard, or been told that could cause digestive issues - mono, Lyme disease, strep, we even had them check for intestinal parasites (eww, I know). Nothing. They decided it was probably IBS and referred us to Vanderbilt pediatric GI.
The first doctor we saw there… I still want to punch her in the head (Drew says that’s not allowed and I’ll get in trouble if I do it.) Anyway, she walked in the room basically having already decided he “just had IBS” and wouldn’t listen to anything we said, prescribed time release peppermint capsules and laxatives and sent us home. I asked about his gallbladder because he had a lot of gallbladder attack symptoms. She blew that off and said it shouldn’t be his gallbladder because he was only 14. She did order upper and lower GI scopes, I think just to appease me, but after those were done several months down the road she said everything was normal and it’s “just IBS.” Oh, she also wanted to refer him to psych for pain management.
Thankfully, a dear friend talked me into taking him to see the Naturopathic doctor she and her mom see. I am convinced Liz saved his life. He got sick in April. By the time we got to her in June, he’d lost so much weight I could see most of his bones. His skin was kindof a grey-sh white. He had no energy. Everything he ate hurt, so he didn’t want to eat anything. She determined that his gallbladder was indeed very sick, as was most of his digestive tract, but the gallbladder was the worst part - and she started him on supplements made from food to heal him up. She told us later that she was also worried he wasn’t going to make it. She said he was one of the sickest people she has ever seen. Yet the Vandy doctors just blew it off as IBS… She also is the one who figured out he could no longer eat anything dairy along with a list of other foods like sweet potatoes, oranges, corn, pineapple, and asparagus. I’m probably forgetting some. It was a pretty extensive list. Thankfully, as he’s gotten better he’s been able to add a lot of that back in. Still no dairy, though.
So began learning to shop for non dairy stuff to cook with and for him to eat and drink. There wasn’t a lot out there to begin with. We had to experiment with different milk types - soy was also bad for him, almond is ok. Goat milk is his favorite and best. We’ve found a couple of different kinds of “not cheese” as we call it and “not butter.” Country Crock recently came out with three kinds of plant butter that are great and actually easy to find at most stores.
Some time later… a year or so maybe… Conner was doing some better, but we still had no answers as to why all this had started. After talking with one of my therapy kiddo’s mamas and switching pediatricians to one who agreed that all this with his GI system was definitely not right or normal and something beyond IBS was going on - I got his Vandy GI doctor changed. This new one listened more, which was nice. He’s the one who brought up Ehlers-Danlos Syndrome. He’s also the one who looked at the upper and lower GI scope results and said they were NOT normal because his enzyme levels were all way low except for the one that digests protein. So his pancreas wasn’t functioning properly. And guess what some of his other symptoms are? Pancreatitis symptoms. Yep. He prescribed some drops that were supposed to help with sucrase enzyme. We also talked to Liz about it the next time we went and she gave him some nice digestive enzymes that have helped a lot.
The new GI referred us to Rheumatology who also agreed that he has Ehlers-Danlos. Nothing showed up on genetic testing, but they said that just means he doesn’t have one of the more complicated types. His is somewhere in the 1-3 levels (out of 13 last time I looked). So why does Ehlers-Danlos cause digestive system issues? Nobody really knows. Maybe his flared up because he was growing so fast all of that connective tissue in his system couldn’t keep up and grow fast enough. I don’t know.
What I do know is that I’m glad he’s better. There’s nothing worse than seeing your child in pain and sick and knowing there’s nothing you can do to help make it better and even worse when you can’t figure out what’s causing it to begin with. When they did those scopes I was half hoping something would show up so we’d have some sort of answers. The other half of me was hoping nothing would show up because there’s always the chance of something being really bad. Conner missed most of the last two months of school his freshman year and a lot of his sophomore year. I call that his lost year. Thankfully the school sent home an extra set of books and his teachers and classmates were all wonderful about helping him. Last year was pretty good. He only missed a little school, he played on the soccer team (which made me cry because at one point I didn’t know if he would ever feel up to doing something like that and it was so wonderful to see him feel good and play.) He got to have a normal year.
This year, his senior year, has been good health wise. He’s only had a few days here and there with a flare up. And then The Virus hit… so he’s missing the last three months of his senior year, too. That breaks my heart for him, and all the other seniors. They’re missing out on so many things they have been looking forward to for most of their lives. After the first two years of high school being such a mess I really really wanted these last two years to be fantastic. I was looking forward to soccer games and the spring play, and the Jr/Sr banquet - lots of pictures and stories about everything that happened all of them. So this maybe isn’t the awesome senior year we had planned. It’s not the awesome senior year anybody had planned! But he’s healthy (with the odd occasional flare up, but those are very rare), he's growing and gaining weight again. His smile and laughter are back - the real smile and the real laugh - not the “I’m going to smile because I feel like I have to” one. For these things, I am grateful. For these reasons, it is an awesome senior year.