testing

Part IV: The Carousel of Crazy (January 2012-June 2013)

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By the start of 2012 I was ready to put the past where it belongs and move on with life. We started enjoying all of our normal foods again. I went back to cooking one meal for all of us. Kaelyn, our third daughter, was still in the heyday of her fits, but at least we didn’t have to focus on every minute detail of our diets. We had a little bit of our lives back and we weren’t going to waste it on researching anything else medically related. I even started a new job in addition to my teaching online job, and I found out I was expecting. Our sixth baby was a surprise, but a nice surprise after those heavier months. A new life has a way of inspiring you to look on the bright side! 

That summer came, and I was happy to have all my kids home for the next few months. Just as my belly was starting to really show, Keira was starting to really complain of her tummy hurting again. This was her last summer before she started kindergarten, and I wanted her to get answers before she started school. I put her belly aches off for a few weeks, but it didn’t last long. Those tummy aches became more pronounced. She was in pain—a lot of pain. Every day she would tell me how awful she felt. Finally, I pulled out the one thing I knew in my gut would probably help her. We took her off gluten again.

The last part of summer I spent trying to get her tested for celiac disease. At her back to school checkup in August of 2012, I asked for a celiac panel. I only knew this existed because Makenzie had had one when she was hospitalized. What I didn’t know is that she had to be on gluten for a very long time, and a moderate amount of it at that, in order to get a true reading. So even though she officially started school gluten-free, here we were putting her back on gluten. And I mean, we basically stuffed it down her throat. We were constantly gluten-ing her up. Here’s some bread. Oh, look, you’re favorite—mac ‘n cheese. Here, let me help you sprinkle those extra breadcrumbs onto your chicken nuggets. We were starting to enjoy MISSION: STUFF THE KID WITH GLUTEN!

We did this for a couple weeks and then got her tested. That dang test came back negative. Again, I was just so sure it would tell us she had celiac disease. Once the testing was complete and we thought we had our answer, I gave birth to our son, Keian. It was a difficult birth, the toughest to date—by far, and to say I was struggling afterwards isn’t quite painting the whole picture. But as my health was taking a downward spiral, I saw that Keira’s was, too. By her sixth birthday in October 2012, she was the sickest I’d seen her. These details may seem gruesome, but I’m trying to spread awareness. And I figure if you’ve made it this far into the story, you are worthy of these details.

The poor girl was passing loose, watery stools with bloody mucous. When I saw this with my own two eyes, I was immediately alarmed. There’s a history of stomach and other cancers on both sides of her family, so we took her straight to the GP. She was not sure of the cause, so she referred us once again to our favorite (please note the sarcasm) children’s hospital. I prayed and prayed we would not endure the same quality of treatment we last received there, and I think we did end up with a better doctor.

This time, we got into the GI in a matter of days. Apparently they don’t like to deal with screaming babies until they’ve let them go for so long that they are now school-aged children passing bloody, mucous-laden stools. The new GI we saw seemed pretty intelligent and seemed to want to figure this little mystery of a kid out. She looked Keira over from head to toe, asked us several questions, took her whole history and decided to do blood work. She wanted to check for celiac disease, but we told her she’d been off and on gluten for the last few months and one test had already come back negative. Well, she decided to test anyway. If the celiac panel came back positive or if she was anemic, Keira was guaranteed some scopes. Well, if I know anything about my daughter’s medical issues, I do know she consistently tests anemic. And she did this time, as well—though her panel came back negative—go figure!

So within a couple days, our three week old son accompanied my husband, Keira, and me to her endoscopy and colonoscopy appointment. I was terrified thinking about what they would find. When they took her back, we got to accompany her. We were allowed to sit with her until she fell asleep. I’ll never forget how she suddenly passed out shortly after the drugs were injected. It was so sudden and that made it a bit scary—but at least we were warned this would happen. I cradled my baby boy and we all walked into the waiting room. Ellen was on the television, and I remember it was a funny episode where some lady (who worked for Ellen) would walk up to strangers and sing lyrics to them as if they were trying to have a conversation. I watched this to distract my thoughts. I also watched Keian as he let out his first real smile. It was absolutely precious. The timing was perfect and something I will never forget.

Sometime later, the doctor called us into a private room. She talked about what she found and there were absolutely no growths. I was instantly relieved and kind of let everything else go in one ear and out the other. She said she would call with biopsy results within a matter of days. I got this phone call in the kids’ school parking lot after the Halloween parties at school. I recall lots of kids talking loudly and my mom handing me her checkbook to take notes on the back. As I was listening to the nurse explain everything they found, I was baffled again. She did say that there were three prescriptions waiting at the pharmacy for us to go pick up. One was an anti-inflammatory because her small intestines were inflamed—non-specific inflammation, to be exact (yay, I love mysteries). She had an acid reducer because she had inflammation in her esophagus and obvious damage from years of GERD. And she was once again, put on Mirilax to ease the constipation.

So we started in immediately with getting her good and drugged. Pentasa was taken three times a day, Mirilax once a day, and her GERD pills twice a day. This lasted from November to January, at which point we were instructed to meet with the GI again to check in on Keira’s progress. I remember this day, January 17, because it was Keian’s four month birthday. I was trying to mentally prepare for this appointment by thinking about how Keira had been feeling, and honestly, she seemed much better—well, all except for this lump that developed under her left breast in December, but I’ll discuss that later. But overall, her digestive symptoms were improving. Complaints about tummy aches had drastically dropped—a big plus in my book! By the time we got back to see the doctor, I felt prepared to answer her questions.

Matt and I both reported how much better we thought she was. Even Keira added her two cents about her symptoms all but disappearing. We did tell the doctor that we had her on some gluten at home this whole time, but she did eat gluten-free when she was at school or with anybody else. I did this because I wanted to know when and how much she consumed so I could check for reactions. Nobody had instructed us on what to do about the gluten, so we winged it. She was getting gluten in small doses a few times each week. Then, the doctor remarked and noted (as I’ve now read in the report), that she looked extremely pale and had dark circles under her eyes on this day. She asked Matt and me if we agreed, and we both looked at each other and shrugged. She always looked that pale to us, and this was written in the doctor’s notes as well. Since she seemed to be doing better and we had no additional complaints, we were told to start the weaning process. Since Pentasa was the heaviest, for lack of a better term, drug she was on, we started by removing one pill per day. Every two weeks we were to cut another pill/dose until she was drug free. I liked that idea and so we started at the end of January because this was her three month mark of being on the drugs. She also told us to have her eat gluten as normal—including at school—so we would know if it was the drugs or the gluten-free-ish diet that was making her better. So we obliged.

After seeing the GI that day, we went straight to see an endocrinologist with this same hospital. Prior to this appointment, Keira had a bone age X-ray done as well as some blood work. These results were forwarded to the endocrinologist. When we finally saw the doctor, she told us that the blood work looked good as did her bone age. She questioned some lifestyle topics (like eating food that comes from BPA lined cans—which we didn’t eat) and discovered we may be contaminating her endocrine system by using lavender shampoo. We told her we would stop using it, and she told us that if the lump didn’t go away we should come back in six months. Ah, thank goodness for the ol’ standby known as the “wait and see” approach. It’s a mother’s favorite! Luckily, that mystery of a lump went away at the start of spring.

We left the endocrinologist that day and went home to mark our calendars for the day we’d begin the weaning process. Everything seemed fine at first. We started off in February full steam ahead. I finally felt we had some answers, we’d started fixing them, and now it was time to go back to normal. Heck, she was even eating gluten again—life was peachy. That is until Valentine’s Day 2013. Just two weeks into the weaning process and my baby girl was home sick with a fever. It wasn’t very high, but I kept her home and she rested on our couch. A few hours later, I checked her temp and it had gone to not quite 100 degrees to over 103 degrees. I got her a cold cloth and loved on her. Shortly thereafter, I was in the kitchen and I suddenly heard a scream of pain come from my girl. I ran to her side and she was in the fetal position, grabbing her belly in obvious pain. I immediately tried to get her to go potty, but she could hardly even stand. After a feeble attempt, I told Matt we were headed to the ER. I was thinking her appendix was about to or already did burst. I know nearly nothing about this condition except the location and severity of the pain, so going off of that I took her in. By the time we reached the ER 20 minutes later, the pain had gone from a 9 to a 2. I was at a loss again, but seeing as how she had the fever and the sudden onset of pain, I took her in anyway. They drew blood but we decided not to do a CT Scan because it did not seem necessary. They checked for several viruses and the like, but everything came back mostly normal. The doctor did note that she had dropped a whole point in her hemoglobin in the six weeks since she’d had her blood drawn for the endocrinologist. This concerned the doctor enough to tell us to follow up with our GP, but not enough to do anything besides wish us well on our way.

I took her home from the ER that night more frustrated than ever. The puzzle pieces were finally starting to make some sense, but I think I was too angry to try to work them out in that moment. But it did sit in the back of my mind for the next six weeks as we continued to wean our daughter off her anti-inflammatory meds. We were down to one Pentasa a day, and the tummy aches were back again in full force. I did as the doctor said and called to report the change. She told us to immediately go back to the full dose of Pentasa, stay on all the drugs, and come back for a scope. So we did, and two weeks later we were right back where we’d been six months ago—getting scoped at the GI clinic.

I wonder if you’re thinking like I was at this point—surely they found something this time. There will be an answer after six and half years of dealing with these symptoms. Right? Wrong! They called a few days after the scopes to let us know that everything was fine and we needed to start the weaning process again. “Call us back if she starts to have symptoms again!” the nurse exclaimed.

I think my response was something like “Why? So you can scope her again, find nothing, and tell us to start weaning again? How long am I supposed to run my daughter and our family on this carousel of crazy?”

And then I hung up the phone. It was a low point for me in this journey. Just when I thought, once again, that we were going to have real answers, real hope, it was all lost with a lousy call from the nurse. All the blood draws, all the time off work, all the scheduling management, all the pain my daughter was in, all the effort made to keep the drugs in her, all the blood and sweat and definitely tears were all for nothing. NOTHING! Not one single thing came of this—or so it seemed at the time. But what I failed to realize in my moments of despair watching my daughter fade before my eyes, was that this would be the turning point in getting her well. This is when we started the healing process.

To be continued…