Month: June 2014

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…

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Part III–eating paper, throwing tantrums, and seeing more doctors

Keira had always been a very picky eater, but now she was starting to eat things that were not food. Sometime in her toddler and preschool years, I forget exactly when, she started to eat paper. At this age, my kids are natural hoarders. Keira was no exception. She had plenty of junk in her bed–from stuffed animals to pillows to books. I noticed the books she stored in her bed were all chewed on. I saw that the upper right corner of these books all had bites taken out of them. It looked like a bunny ate these books for afternoon snacks. It was obvious little teeth were tearing at the pages of our favorite picture books, but we did not have any rodents in the house. Again, I wish I’d known at the time what I was dealing with. And for anybody reading this who is going through something similar, this is a sign of pica which is found in people with nutrient deficiencies. In fact, according to one PubMed study, “Underlying celiac disease should be considered in children with persistent pica and growth failure even if gastrointestinal disturbances are minimal.” And just FYI, Keira was very petite, and growing less and less each year.

At the age of 3.5, some symptoms not related to the digestive tract started to take shape as well–tantrums, to be exact. And these were not your average fits. I’d had one older and two younger toddlers and many friends with children by this point in my mothering career, and not one of them would throw fits like this. These outbursts could be over something as simple as the texture of her sock—we never knew what would set her off. And when she did “go off,” she would scream for hours. These screams were high pitched. Her eyes glossed over. At some point after her initial screams, she just screamed to scream, or so it appeared. She didn’t even look like she was of this earth when she had her fits—it was like her mind was somewhere else.

During this time in my parenting journey, I wanted to run for the hills. I did not know what to do with her anymore. Her fits not only continued, but they increased in frequency and intensity. They seemed to lurk around every corner. I hesitated to say anything to her, afraid it would cause an episode. I wanted so badly to be close to her and find a solution to whatever was causing her to act this way, but I let fear get the best of me. While I wanted to help her, I will confide that these fits put a huge {temporary} wedge between us. I’m not proud of this, and I really did not know how to help this fact, but that’s what it was—a fact.

As parents, Matt and I were just trying to raise four girls all four an under, and these fits proved to be quite challenging. We had three other kids who needed our attention, and we were not prepared for everything that awaited us. Despite the chaos happening under our roof, I did have a friend who was going through something a little similar to what we were going through. When we talked about our children, she mentioned she had found an allergist who was starting to help her son. I was excited for her, and I thought maybe that was the route we should take. So I looked up allergists in town thinking I might find help.

I ended up getting her an appointment with a random allergist in town in the Spring of 2010. I thought maybe Keira was allergic to milk. She did have those hives as a baby. Could she just not know how to express her pain or thoughts and so she screamed? I just knew I’d leave that doctor’s office with answers. So we went to the appointment, and I was less than impressed. The doctor was a joke. Basically, since she wasn’t seizing or dying before my eyes, she was fine. His arrogance was enough to knock me out of his office never to return. And I felt let down again. Worse yet, I felt I had let my daughter down again.

These awful fits of screaming lasted well into the summer when she was three. I remember a vacation we took to Colorado. We tried to make happy memories, and we did make some. But I will never forget being awakened by our screaming child at 2 am. We were in a condo with thin walls in a little ski town. We were dumbfounded as to what we should do with Keira as she belted out in her highest pitch to date. To prevent waking our other children and guests of the complex, my husband lifted her into his arms and took her to the car to let her scream it out. Oddly enough, this wasn’t the first time we had to do this. I actually had to do the same thing when we were staying in a hotel in Illinois when she was about 16 months old. I remember being clueless then, too. All I could do at midnight in my car in a hotel parking lot was wait for her screams to end. I recall my mom, who was staying with us at that hotel, saying she could hear Keira screaming in the parking lot—my mom was in our hotel room. Fast-forward two years later and here we are again.

After Keira’s fourth birthday that fall, her father and I grew more perplexed. We were worn out and I remember wanting to give up. I would never actually give up on my children, but not seeing an end in sight can play evil tricks on your brain. And when a thinker like me is given the time to imagine what could happen to their child they don’t know how to help and seems to be getting worse with every birthday, they go to the deepest darkest corners of their mind. Places I don’t care to ever visit again. No hope or faith rests in these places, and sadly, I spent most of my time there. This continued for months until the summer before her fifth birthday. By now, we were finally seeing some improvements in her demeanor. She wasn’t screaming as often or as intensely. She was easier to get along with. Our family life seemed to be happier, but we hadn’t reached the end of the tunnel yet. The fits still happened, and a new symptom started. She was complaining of tummy aches, constantly. That’s when I remembered my friend who sought help from an allergist. I was nervous I’d be laughed out of his office like I was at the previous allergist’s office, but I decided to call him and see what he had to offer.

A year after learning about him, we finally went to this allergist my friend recommended–who is actually a PhD and an MD. I found out he is a biomedical doctor—I didn’t even know what that was. I just knew he was going to help my kid. We sat through blood draws, skin pricks, and many painful screams. It wasn’t a pleasant visit, but I was willing to do whatever it took to help my baby. From these tests I learned what and IgE (a “true” allergy, think anaphylactic shock) is, and also what an IgG is. Living in the Midwest, I certainly knew what “true” allergies were, but I’d never heard of an IgG reaction. These are the more delayed immune responses—and they cause multiple symptoms. Well, Keira had IgE and IgG reactions. We were instructed to start allergy shots and remain off several different foods in order to heal her gut. “Heal her gut?” Yep, I was wondering what in the world I was uttering—I didn’t know anything about leaky or permeable gut at the time.

That fall in 2011 we stuck with our very strict diets. I had two other children who also saw this doctor, and their tests all came back with different allergies and sensitivities. This meant that I was cooking one meal for my husband, Kenli and me; one meal for Keira; one for our third daughter, Kaelyn; another one for our fourth daughter, Makenzie; and on top of that I was making baby food purees for our fifth daughter, Karys. This was financially, physically, and emotionally taxing. I was constantly focused on what to feed our kids and when their next allergy shot was due—because God forbid we went past the window of time and had to start over. But guess what, that actually happened.

In December 2011, I called and called the doctor’s office to order new vials of the serum for their allergy shots, but I never received even a phone call back, and we missed our window. About the same time, my kids were visiting my mom without me there, and she accidentally gave them a cookie that had one of their IgE reaction foods in it. I rushed over there expecting the worst—Epi-pen in hand. When I got there, everything was calm and cool. Nobody was freaking out. Everyone was breathing normally. I didn’t even see hives. And that’s when I said screw it! I was done, DONE, with this “fix.” I felt that the system failed us once again. I was done paying for it with my sleep, sanity, and money.

Part II of Keira’s Story–beyond screaming and the celiac belly

It took me 13 pages and about 5 hours (with some disruption from the babes) to write Keira’s story. I’ve posted the first couple of pages, and now I am picking up right where I left off a few days ago. Just to recap, Keira was born happy and healthy. I was madly in love, but her health started to become abnormal within her first month of life. She was constipated and screaming for the first few months of life. This was a stark contrast to the parenting experience we had with her older sister. We were dumbfounded and blindsided as we tried to survive each hour. We turned to our doctor, but we didn’t get much help. The story picks up here around her four month well child check.

“Keira was screaming several hours a day, every day, for months. Now that I’ve had six kids and the ability to see with hindsight, I realize just how sick she was. But not having any other experience with kids—other than with healthy-as-can-be Kenli— I had no idea just how abnormal her crying was. But I did know that what we were being told just didn’t seem to fit. She wasn’t fussing just to fuss. She wasn’t unhappy with life, (yes, these things were actually mentioned to me as a possible cause for her seemingly miserable existence)—there was something obviously not right with my baby!

I knew better than to think she was just a sack of humbug, but because our doctor reassured me it was “normal” (don’t get me started on my disdain for that word) for some kids, I went with it. I should have listened to my gut. My baby was screaming and grunting, making a face that can only be made when one is in severe pain. To sit here seven years later and imagine the pain this little 3 month old baby was in just completely rips my heart in pieces. To know your child suffered that much pain is awful and nothing I wish on you or anybody else.

In the first months of her life, I fed Keira only breast milk. Convinced I was making her sick, I decided to put her on formula at three months old. Again, hindsight affords me the right to choke on my words right now, but nevertheless, I tried just about every formula on the market.  We started with the “regular” baby formula. From there we moved on to a formula for gassy babies, then we tried one made from soy, and again we tried another that had some other label I can’t remember. None of these seemed to make her feel better. We were getting nowhere real fast. By this point, my husband and I were drawing blanks on the ‘why.’ Why was our daughter screaming all the time? Why was she never happy? Why did she rarely smile? Why did we have to hold her in very specific positions for hours on end until our arms wanted to give out? We hoped we would get answers at her upcoming four month well child check.

When we made it to the doctor’s office, I was complaining  that something just was not right with Keira. In response we were told that she was just gassy. As if she just had a common cold– there was nothing we could do but wait it out and try to rest. I nearly begged for answers, but of course our doctor didn’t have any. We left her office wondering what to do next. All I wanted was somebody to help me help my daughter, and nobody could help. If I could paint a picture for you of how it felt to be her helpless mom, I’d ask you to imagine that you were carrying your screaming, sick infant in a post-apocalyptic world—wandering the woods looking for help and not a single soul existed. Sound a little dramatic? Good, that’s exactly what I was intending because that’s exactly how it felt. My world was in shambles because I couldn’t help ease the pain for my baby, and there was nobody anywhere in the world who understood either one of us, and therefore, nobody who could help us. I did not know if there was going to be an end to this tunnel, and I sure as heck did not see a light. It was isolating, confining, and a miserable way to live.

At a loss as to what to do to help us, and I do know our doctor wanted to help us, she told us to try a formula called Nutramigen. She also put in a call to a nearby children’s hospital. But it would take two whole months to get in. Just when I thought I saw a glimmer of hope for relief, I realized it was just out of reach. TWO MONTHS? How could we wait that long. We had already been waiting four months to fix my baby. But wait, we did.

We ended up seeing a pediatric GI. He probably couldn’t have cared less on the real reason we were there. With such a young infant, we didn’t have much to go from to determine what was normal for her. He poked and prodded a little and then said, “She’ll either outgrow this by 15 months, or she will have “this” for the rest of her life.” “This,” was basically your run of the mill GERD (Gastroesophageal reflux disease). Again, it seemed like we left another doctor’s office with very little to go on other than some drugs that our baby ended up refusing to take anyway. Oh, and he recommended we save a few bucks and switch out the super expensive formula for another formula that was basically the same but cheaper. Yep, that advice cost us a whopping $600. And they say not to use Dr. Google—haha. I bet Dr. G would have saved me some serious cash! Had I known then what I know now, I’d be pressing for answers. Why did my child have GERD? You don’t simply have GERD for no reason. There is a reason, but much of western medicine fails because it rarely examines the WHY part of the equation.

All of this happened in her first six months of life. In the next few months before her first birthday, things started to ease up a little bit. She smiled more. Her eyes looked brighter, but this baby still cried. She still didn’t feel well. She did not sleep through the night (until after her first birthday), and when she did sleep it had to be on her daddy’s tummy. They slept tummy to tummy for months. And then some random and odd things happened. She broke out in hives after having one bite of homemade ice cream. She got them again after holding a balloon. And then again at 12 months she broke out in hives after kissing my mom who had just eaten a peanut butter cookie. Thankfully, she never went into anaphylactic shock, but these pieces of the puzzle were being added to the pile.

Her second year of life was somewhat normal—or at least it appeared to be. She really loved her bottles. Nothing could separate her from the baba, and Lord help whoever or whatever tried to come between them. My husband and I kind of laughed it off and thought it was an enduring characteristic of our little drama queen. When she started to develop the classic Celiac Belly (I didn’t know this was a thing back then), we just thought it was odd that we had a tiny little baby girl with a belly that looked nine months into pregnancy.

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We wrote these symptoms off as par for the course for toddler development.

By age three, she ended up visiting another train of doctors. When our family practitioner could not figure out what was causing my potty-trained child to suddenly have not only accidents, but accidents that hurt, she sent us to the hospital to have her kidneys scanned. Worried they were going to find something awful, I took her over to the hospital as instructed. She had an ultrasound, and everything checked out fine. Nothing was out of place. We went home again without answers. I grew more and more frustrated with the lack of knowledge from the medical profession as I watched my daughter writhe in pain every day. Finally, it got to the point where I took her back to another family doctor.

This doctor listened to the array of symptoms Keira had and tests that had been done, and she decided to do an X-ray. Honestly, I thought the idea was a buck short and a minute too late.  How was a simple X-ray going to show us something that an ultrasound couldn’t pick up? But thank God I didn’t speak my opinion at that time because the X-ray did show something. My girl was backed up from here to kingdom come. There was so much stool stored in her that it was blocking her urine output. And of course anybody with this much stool would be in pain. So as conventional medicine would have it, she started including MiraLax into her daily routine until this symptom cleared. Again, with the treating of symptoms—I’d had enough, but I didn’t know what to do about it.”