It seems that I’m averaging updates on my Beaudozer about twice a year, most recently Spring 2017 and Fall 2016. So in that same vein, I’m posting another Fall update. This isn’t your typical blog reading, and it won’t attract the majority of blog readers. But it helps me to keep track of my son’s journey and allows others with Eosinophilic Esophagitis or their caretakers to have just a glimpse of what our lives are like–the treatment options, the diet struggles and the roller coaster we dub as progress.
As a mom, I know what it’s like to feel like you’re up against something big and undefinable. I know what it’s like to hate doling out medicine but not sure where to turn. I know what it’s like to keep pushing for answers while others tell you not to worry because your child is thriving. I know what it’s like to feel that gut instinct that something’s not quite right. And I also know what it’s like to hear the heartbreaking words of a diagnosis you’ve suspected for months casually spill out of a doctor’s mouth. I know what it’s like to blink back the tears and put up a strong front, not for your own pride but for your child.
In July 2017, we switched pediatric GI doctors because our insurance company no longer covered our old doctor. The good news about this change is that our new doctor was open to doing food trials. In order to do food trials, we need to get Beau’s eosinophils (a type of white blood cells indicating inflammation) count down to less than 15, which is considered remission. This will be our biggest hurdle with food trials as he has yet to scope clean.
As parents, our goal for Beau is to narrow down his food triggers so that we can reduce or eliminate daily steroids. By starting down this path this fall, we will have two years to figure out as much as we can before he starts Kindergarten. The first step of this process was to have another upper endoscopy to get a baseline.
In August 2017, Beau had his first scope in 10 months–quite a break after having four scopes in the previous 10 months. At this scope, No. 5, he was swallowing 0.5 mcg of budesonide in slurry form once daily and inhaling Flovent 44 mcg once daily–both steroids. I had prepared myself ahead of time that his eosinophils count would likely go up from the last scope since he was on a less restrictive diet and less medication. So when the results of 66 eosinophils came back I was not surprised.
The day after we got his biopsy results, I met with a pediatric nutritionist in Atlanta who specializes in EOE. Together, we combed over his diet since birth as well as his five endoscopy results. We narrowed down three possible triggers in his current diet–gluten-free oatmeal, rice and sunflower products–and eliminated those. Besides the new eliminations, he does not eat gluten, dairy, fish/shellfish, soy, eggs, peanuts/tree nuts, corn, peas and mustard.
Oatmeal and Sunbutter have been staples in his diet the past 10 months, so it has been hard taking those away. Breakfast has been hard as I’ve tried cooking with different flours to make him pancakes or muffins, but they tend to be gummy as I work with an approved egg replacer. Dinner is fairly easy, and lunch is often leftovers, but snacks have been super hard as there is not much that will keep him full.
The day we cut out oatmeal, rice and Sunbutter, we also stopped his swallowed steroids. Patients do not take the swallowed steroids on food trials because we need to be able to tell if the food eliminations are working and reducing his eosinophils count–and not the medicine.
Beau will be scoped again in November, and the best possible scenario is that his count will drastically drop. If he goes into remission, we can begin adding foods back into his diet to see if he tolerates them. If his count does not go down, we have a very hard decision to make. The next step to getting his count down would be to go on an elemental formula. This would eliminate all possible food allergies from his diet to hopefully get a clean scope. There is always the chance that environmental allergies are playing a role in Beau’s count. But we wouldn’t know that until we remove all food so we know it’s not the issue.
We were mentioned the possibility of a feeding tube for formula last fall, but managed to avoid it. Now that he’s a year older–he just turned four–we would rely on him drinking the formula instead of having to place a feeding tube. My heart clinches just thinking about this possibility, but I know that if there is ever a time to do food trials–even with formula–now is the time while he’s young and in a controlled environment.
I keep thinking that we keep taking things away from his diet, but more than likely he is only allergic to a handful of foods. The only foods we know for sure are peas, mustard, eggs and tree nuts–especially cashews. What if he’s fine with dairy or gluten or fish or peanuts? Our goal is to open up his diet in the long run so that by the time he starts school he has more options. The nutritionist recounted a story of a pediatric patient who had to go on elemental formula and it turned out that he was only allergic to chicken, apples and white potatoes after he completed his food trials.
I am praying that these three new food items he just eliminated will work to lower his count, but if not, I have confidence in our two-year plan to find his triggers. It won’t be easy, and just thinking about it makes me sick to my stomach when I consider that November and December are the hardest months of the year to cut out food. But, God is good and my Beaudozer will have an amazing story one day.