Hey all! It has been quite a while since I’ve posted anything, and for good reasons. I have been a mama in research mode, healing mode, survival mode. Rowan started showing signs of a UC flare in mid-May, and all of my extra time and energy went to healing my daughter, again! I was pretty absent from social media altogether and just felt like waiting to share our experience until after we weathered the storm. I am pleased to say we came out on top, so allow me to take you through our journey of what I’m calling, The Summer of Rowan.
After an excellent GI appointment and finding out that Rowan had been in remission for almost a year (we knew she was doing great, but had just never officially heard the term used), within a week, we saw…blood in stool! Nooo! We frantically tried to think back to what new food we had introduced and obviously eliminate it, but nothing really came to mind. (And I write EVERY new food down, and we usually wait one week in between new foods to be able to pinpoint it back in case of a bad reaction.) We finally realized she had eaten a food cooked in something not on her diet, so we thought that must be it. Within less than a week, she went from a little blood in her stool to going around five times a day, blood, diarrhea, cramping.
We tried some turmeric first, then a suppository for a couple weeks. This seemed to help, but symptoms picked right back up two days after finishing. Mid-June we upped her daily medicine and probiotics dosage and added in an oral steroid. But just a couple days after we started to taper, symptoms returned. (Unfortunately Rowan’s badass GI doctor was transitioning hospitals during this time, so we were just seeing a handful of other doctors that did their best. But it just wasn’t how our doctor would have approached it.) We were told to simply continue with tapering the steroid, despite the lack of progress. So I decided to really play with her diet to try and help. We went back to the Intro Diet on SCD, and I even weaned her from my breastmilk, thinking that somehow what I was eating could possibly be affecting her sensitive system. (A decision that was SO difficult, but I thought necessary at the time.) No real progress was seen from this, so we added in a suppository again. No improvements.
One morning in July, our girl was refusing to eat or drink anything, suddenly threw up, then abruptly fell asleep while sitting next to me in our living room. This was not normal, so we loaded up our kids and headed to the ER at our local children’s hospital. Rowan was severely dehydrated and her blood glucose was critically low. She was admitted to the hospital and after an overnight stay was stable enough to head home. We followed up with a GI doctor and continued on.
A couple weeks went by, still no improvements. One morning while we were asking Rowan if she wanted some more breakfast, she completely zoned out. We thought she was just being silly at first, but after several seconds, we realized something else was going on. She just kept staring forward, then lost muscle tone. She couldn’t move or talk, but could move her eyes to look at us as we talked to her. Then her eyes and mouth started twitching, then back to blankness. What was happened to our baby girl?! We quickly scooped up our children, buckled them in the carseats and zoomed to the ER. She regained muscle tone and could move and talk again by the time we got there. That’s when we realized, she had just had a seizure. She once again had very low blood glucose and was admitted to the hospital. Her CT and EEG were both normal, and she was released the next day.
We followed up with her pediatrician who referred us to a neurologist. We met him simply to get established, in case this was going to be a reoccurring thing. I added in some more supplements and CBD oil to Rowan’s regimen. In the beginning of August, after another seizure, which we believe to be related to low blood glucose, we added some slow burning carbohydrates to her diet. (And bought a blood glucose monitor!)
Soon after all this, we were finally able to get back with Rowan’s GI doctor and catch her up with everything that had been happening. The next morning I received a phone call from her nurse. I was informed that Rowan’s hemoglobin level was dangerously low and I needed to take her to the hospital immediately for a blood transfusion. What??! My poor baby needs blood?! Before I knew it, we were back in the ER, being admitted to the hospital again, but this time our girl was receiving blood. It was such an odd sight, seeing someone else’s blood going into my three-year-old daughter. I was suddenly very thankful for all the people who donate blood.
A few days later Rowan had a really high fever that we monitored and treated at home, but followed up with her pediatrician to be safe. Her white blood cell count was very elevated and it was suggested she get on antibiotics. We had just started oral steroids that same day, so I was worried about overloading her little body, but didn’t know what else to do, so we started antibiotics too. We finished the course of antibiotics and tapered off the steroid. Once we began seeing blood in her stool again, her GI doctor had us go back up to the last steroid dosage when we didn’t see any blood.
After trying so many different things, with little to no improvement, her GI doctor thought moving up her daily medicine might be the next step. This would make my girl have a compromised immune system all the time, so that would just open up a whole new slew of worries. But we were also concerned that her original diagnosis of ulcerative colitis, may have actually been Crohn’s disease just presenting as UC initially. Regardless, immunosuppressive drugs seemed to be in our girl’s future. But luckily our GI doctor wanted to perform an endoscopy and colonoscopy again to see what exactly was going on before changing any medications.
As we got our minds wrapped around the possibility that our kid would possibly have a compromised immune system for the foreseeable future, I continued researching other options. And everytime I seemed to be at the end of my knowledge on new things to try, something new would fall into my lap. (This time it was donkey milk. An experience for another post!) We prepped Rowan for her scope, made arrangements for my mom to take care of our son during the procedure, and went in with hope. Hope that the fact she didn’t poop at all during her prep wouldn’t mean we couldn’t do the procedure. Hope that she did not actually have Crohn’s disease. Hope that she wouldn’t be scared when she was without us. Just hope.
And what a big girl she was! She was very polite to all the nurses and doctors who came in to visit her beforehand. And when they wheeled her off to the procedure room, she told me, “Mama, you stay here.”
After about an hour and a half of waiting, they told us she was finished and we could see her. We crossed paths with the anesthesiologist, and he informed us she did excellent, telling him cookies awaited her afterward! She was still asleep from the anesthesia when we saw her, a helpless little sight. As she became a bit more alert, her doctor came to talk with us with a big smile on her face. It turns out Rowan was not in a UC flare up! What??! She actually had a virus in her stomach that was presenting itself as a UC flare up. Her doctor explained everything to us, then with tears in her eyes, said we didn’t need to change her medicine at all! She gave us big hugs as we tried to understand what we had just been told. This was better than the best case scenario we had been preparing for. Thank God! Everything we have been doing was working. And the protocol for getting rid of this virus was an extra slow taper of oral steroids. (This explains why when we would taper, her symptoms would return.)
The virus in her stomach was Henoch Schönlein Purpura, HSP, which is another autoimmune disease, but is generally thought to be self-limiting. This means once you get into remission with this, it should not ever flare back up.
We successfully tapered her off the oral steroids and are continuing with our new(ish) normal daily regimen of a low dose daily UC medicine, probiotics, a pro/pre/plusbiotic, desiccated liver, vitamin D, CBD oil, donkey milk, essential oils and her modified SCD/Paleo diet. Rowan is our teacher, has been since before she was born. To watch her tough out the pain over the past few months was heartbreaking and somehow inspiring at once. She is so brave, my hero. Our spirited little girl continues to show us new ways of healing, understanding, new levels of determination, new depths of love, and new ways of life.
Children have so much to teach us. We simply must be open to learning.
Camp Finley 