celiac belly

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.”

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