Tag Archives: Food Allergy

Frustration

QsThe other night, we were reminded of how little it takes for Celiac to rear its ugly head and how quickly it can make Cam’s life miserable.

Cam had not experienced “being glutened” for almost two months. He had gone about 60 days without an incident and the times when he experienced symptoms on a daily basis seemed to be a distant memory. Spring activities and plans for the summer had taken over our primary thoughts and while we always keep his condition in mind, we felt comfortable in our day to day efforts to keep him safe. As if it had taken offense to our false sense of security, Celiac reminded us that we were in this for the long haul. And it reminded us quickly and harshly.

Cam went the whole day without having any issues. He had his usual breakfast, packed his lunch for school and we made dinner here at home. We had family over to celebrate my daughter’s birthday and throughout the duration of the visit, Cam had no problems. After our company had left, he went up to get his shower and I started to help his sister get ready for bed. I remember walking into our bathroom where he was standing there; looking at his reflection and brushing his hair. Typical evening ritual. It wasn’t two minutes from when I left him that I heard a cry. It was a sound that dropped my stomach for I knew exactly what it meant. I had not heard it in two months but it is indistinguishable. I went back to the bathroom and he was doubled over with stomach cramps. Just like that. Quick and relentless. The next 90 minutes was all too familiar. Pain, tears, stomach trauma, hand-holding and frustration.

Cam, unfortunately, has to go through the worst of these symptoms on this own, but frustration is something that we all experience during these episodes. The internal questions, for us as parents, start the minute that you see his discomfort. What caused this? What did he eat to set this off? What could I have done differently to stop it? As he lay in my bed with a sore stomach and his body shaking while recovering, we all discuss our theories as to why this happened. Cam feels that he had too much dairy (Celiacs often have varying levels of lactose intolerance since the lactase enzyme is depleted when gluten blunts the intestinal villi).  My wife takes it personally whenever an episode happens to Cam. She is blinded by his pain and can’t see that she is doing everything and more to protect him. Since all of his meals this day were prepared at home, she’s taking it a little harder than normal. She questions if she cross-contaminated a utensil that she used when preparing his food. I ask myself about a different type of meat that I bought and grilled for dinner. Was the beef modified? Was the grill clean? I rack my brain thinking of items that I grilled prior evenings to see if I can find a solution. But no answers come. We are left with our questions and the frustrations of not knowing what could have been done differently to assure that Cam doesn’t have to go through this again.

We’re not naive. We know that there will be future episodes. We don’t know how severe they will be or how quickly they will come but we know that they will likely be accompanied by more frustration. So, as parents, we need to keep our heads and not let that frustration get the best of us. We need to ask the questions that we do. We need to keep advocating to assure that what he goes through is understood and give Cam a chance at an easier life as he gets older.  But for right now, we just need to be there for him, holding his hand as long as he needs us to.

 

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Back to the Beginning

Like many people, I love a good mystery. Whether it be an attention-grabbing yarn weaved by a talented storyteller or a well-crafted tale on the silver screen, mysteries often have many of the same, satisfying components.  You have the hero / detective who is trying to put together the pieces of a puzzle to solve the crime. There is usually one main clue that breaks the case open and ties in all of the leads and brings into focus for the hero and the audience the answer to “whodunit”. And, almost always, there is a time when the story returns to “the scene of the crime”. I wouldn’t call any part of my personal life a mystery and there have definitely been no crimes committed but this coming weekend, I do consider myself returning to the “scene” that provided us the main clue in answering the question of what was bothering my son. I briefly touched on this “discovery” in my very first blog that I posted several months ago. My children are very lucky to have three great-grandparents still alive and thriving in their 90s.  My wife’s grandparents, at 97 and 93, are still going strong and living independently in the same town that she grew up in. Not able to travel on their own, we make it a point to go and visit them every four to six months. It was during our visit last September that we had the night that I’ll always associate with turning point in our family’s and my son’s life.

Cam had been going through various bouts of stomach related problems for almost three months. We had visited his doctor several times over the summer and had a variety of tests completed with no definitive answers (no testing assigned was a blood marker test). We went to a specialist and was prescribed probiotics with a fill cost close to $500. We purchased a generic version which had limited success but we were never convinced as parents that a pill was going to be the answer to his problems (in hindsight, money well saved). We kept a limited food diary but our untrained eyes never discovered a pattern that pointed to gluten as the prime suspect. Every time that he had an episode, we were back to square one. So, with the mystery still unsolved , we ventured on our road trip.

On our journey, which I can now almost drive in my sleep, we have a designated stop at the halfway point. At this stop on this particular trip, Cam had a sausage biscuit for breakfast. Once we arrived in town, we stopped and picked up lunch before checking into our hotel. For lunch, Cam had a chicken sandwich. Dinner that evening consisted of three more types of bread. As many of you know, as a parent you have an instinct that kicks in when there is something wrong with your child. When our kids were babies, I was the one who would hear them wake up in the middle of the night. It could have been just a whimper but something in my head constantly kept me in tune with their needs. So, on that night in the hotel room when I woke up at 4:00 in the morning, I knew something was wrong. The light was on in the bathroom so I got up and lightly knocked on the door. When I saw Cam’s face, I knew he was hurting. He filled me in on how he felt and what had occurred before I woke up (I guess my instincts aren’t as sharp as they were when he was younger). I had him try to rest with my wife and I in our bed but laying down only made his pains worse. After a ten minute attempt at distraction, it was back to the bathroom. The next 30 minutes of sitting on the cold floor were not for the faint of stomach but through tears, hand-holding and support, the pain passed and he practically collapsed in his bed from exhaustion for the rest of the night.

That evening, I promised Cam that I would make his “nightmare” stop but looking back on it now, I realize that I was clueless as to how to make that happen. The next day, thinking that bread had something to do with his issues, I still allowed him to have half of a sandwich bun for lunch. I actually thought that this would help. I had never heard of cross-contamination and had no idea how many food products were causing my son’s body to attack itself. How quickly things have changed. We approach this trip to visit Cam’s great-grandparents with an entirely new perspective. Six months of immersing ourselves into the world of Celiac disease and gluten-free options, we feel we are ready as we can be. We know the extensive efforts that need to be taken with his foods and have pre-planned an entire, long weekend’s worth of menus, snacks and drinks. We return with our own silverware and plates to avoid possible residue contamination. We have looked up restaurant options and have back-up itineraries just in case his needs can’t be met. We have even been bold enough to book our room at the same hotel; the scene of the “crime” and a memory that will not go away any time soon. Admittedly, Cam is a little nervous, and rightfully so. But, if anything does happen, he knows that six months has provided us with more than enough experience to solve any mysteries that come our way.

Life’s Mysteries

I’ll admit it. The thought of writing another entry for this blog has intimidated me these past two days. After my last post, which highlighted what we’ve been trying to do as parents to make sure that Cam doesn’t feel alone in his diagnosis, the outpouring of support has been tremendous. Friends and family shared and commented on our site, reminding us of how much we are truly blessed. Beyond that, the post was noticed and commented on by numerous people that we have never even met. It showed us the power of our words and the amount of compassion that exists but is often overlooked in our day-to-day lives. Some opportunities that have come from a simple, 1,000 word heart-felt message are beyond my gratitude and will be highlighted in future entries on this site (how’s that for a teaser?).  But that didn’t stop the pressure that was starting to build. I want to share our stories but I had no answers as to what I was going to write about when I sat down again at my laptop. My next post remained a mystery. 

As pressing as it was, this case of writer’s block hasn’t been the biggest mystery in our house during the past week. Shortly after my last post, Cam experienced another celiac-related episode. It wasn’t as bad as in the past (they last about 30 minutes now) but it’s definitely not something I want my son to have to go through. Just seeing him doubling over and on the verge of tears with severe stomach cramping is enough to rip out your heartstrings. When his stomach settled and he was able to go back to bed, the questions from both my wife and I began. What had caused this? What did we miss? How do we keep this from happening again? We immediately began a run-down of all of the foods that he had eaten that day. We determined that he did not eat one meal that was prepared outside of our home so that ruled out any restaurant-neglect. For breakfast, he had a gluten-free waffle with butter and some chocolate chips. For lunch, gluten-free chicken tenders prepared in our own personal fryer. For dinner, we had pork tenderloin, mashed potatoes and green beans with a small chocolate brownie sundae for dessert (yes, all components again homemade and gluten-free). So to someone on a gluten-free diet, we did everything right. But, to our Celiac, there was still no answers as to what we missed that resulted in his half hour of discomfort. Our search continued. 

When you are a parent of a child with a food allergy, or with any health condition for that matter, you will rack your brain trying to find out the answers to what is causing your child pain. In my head, I went back to breakfast. Did we use Cam’s toaster that is for GF items only? Was the butter we used from the refrigerator his dedicated stick or the “general” butter? I moved to lunch. Did our oil in the fryer somehow get cross-contaminated? At dinner, he had a glass of milk. Was the blunting of his villi in his small intestine and the subsequent absence of lactase causing a brief period of lactose-intolerance until his body healed? If so, why was he safe drinking a glass of milk at dinner the night before? Going through all of these questions and not knowing if you have found the answer that you seek can be extremely frustrating. 

Honestly, we still haven’t figured out what caused Cam’s latest bout with his Celiac foe but in thinking about it, I was reminded that this blog is, first and foremost, about Cam’s well-being. I want to become an advocate for my son’s disease and I want to continue to educate others to make his life easier moving forward. This blog can be an outlet for continued calls for change and recognition in the food and restaurant industries that will allow him to become more comfortable with his independent choices. It can be a blog for learning something new about Celiac disease every day and having a place to share it with others. It may not be the answer to all of our questions but it is a start towards the ultimate goal of understanding.