Since the entire reason I started this blog is because my son, Zac, has FPIES, my next statement may come as a bit of a shock to you, dear readers.
I’m kind of tired of talking about FPIES.
For almost a year, I’ve been less and less active on the FPIES message boards. Sometimes, when I’m on there, I feel as if I’m living in a real-life version of “Groundhog Day” (minus the slapstick humor of a charming Bill Murray).
Yes, your child can react to anything. Yes, that means sand, dirt, trees, flowers, board books, paper, crayons, markers, pens, soap, SNOW. No, the doctors don’t know everything. Yes, the doctors can actually make your child sick because they don’t know everything. No, family and friends will not understand. Yes, you will have to cook almost everything from scratch. Yes, most processed foods are serious dangers to your child. Yes, you will have to change your life completely.
And NO! I am absolutely NOT making fun of these parents and these questions. This is life-saving, vital information for new FPIES parents to know and ask about, and I don’t begrudge them a moment of their confusion and “FPIES 101” education.
It’s just that for me, for us, for my family…we’re sort of past those early days of absolute gut-wrenching terror and uncertainty. Spending so much time on the boards, fielding those questions repeatedly, became somewhat painful and draining for me.
I felt torn between wanting so badly to help every new mom and dad who showed up with frantic desperation in their questions, and my family’s need to ‘move on’ with life and progress to some sort of normal.
Honestly, I don’t think I’m alone in this. In my nearly three years in the FPIES world, I can think of many FPIES families who have simply dropped off the message boards over time. Some because their child outgrew FPIES, and some because, while still dealing with FPIES daily, now had it under control enough that they didn’t need to spend hours, days and weeks poring over every post…and they had the need to regain some sense of normalcy in their lives.
Though it is incredibly important, at first, it just really isn’t “normal” to spend hours a day on a message board discussing yours and other kids poop and vomit.
The only reason I was feeling so conflicted over my personal conundrum is that, well, I write this blog. I’ve established myself somewhat as a “voice” in the FPIES world; how rotten is it that I’m kind of tired of talking about FPIES?
Partly because of my crazy work schedule this last 12 months, and partly because of my “worn out by FPIES” feelings, I’ve even been missing important events in the FPIES world. Last year I barely eked out a post for Global FPIES Day, and this year I managed to completely miss National FPIES Day (May 4th).
I’d honestly decided to just write a quick little “Oh, yeah, by the way, totally missed this, but…” post, linking to other FPIES Awareness posts I’ve written for a belated National FPIES Day post.
But then I decided to pop over to one of the FPIES boards to see what was “up”, and saw a neat compilation someone made of FPIES parents blogs, Facebook pages, and other “shares”. Most of them I knew about, but there were a few new additions to the blogroll.
I clicked over to read some of the ones I’d never seen before.
And one of them just ripped my guts out.
By the 6th post of her story, I felt that old passion being re-ignited in me.
The situation with FPIES is obscenely ridiculous. There is NO excuse for parents to be forced to go through the confusion and fear that FPIES parents almost always have to go through. NO excuse.
You see, in her story, she and her pediatrician both believed her son had FPIES – from the beginning! But the pediatric GI’s disagreed, and put her precious baby through some extremely intensive and invasive tests before deciding that maybe she was right.
Even now, almost three years after my son was diagnosed, and with so many more doctors being fully aware of what FPIES is and how it presents, this sweet family was left with confusion and fear for far longer than they should have.
As a group, we’ve come so far in three years.
Reading her story, I’m reminded that we still have so much farther to go.
Fortunately for new FPIES parents, there is TONS more information on FPIES available online than there was back in the summer of 2012.
It’s just baffling to me, though, that even with all that information available, a child who was presenting with all the classic symptoms of an acute FPIES reaction could still be denied a proper diagnosis for weeks.
Baffling, and infuriating.
Look, let’s be real here: the internet existed 6 years ago. It was thriving, and extremely helpful to parents with unusual medical situations.
But 6 years ago there was nothing on FPIES online.
Three years ago, when we got our diagnosis, I found exactly three FPIES blogs and only three medical references to FPIES when I did my initial searching (hence, the reason I started writing).
THREE YEARS AGO there was almost nothing available on FPIES to help a frightened mother out. The membership numbers in the FPIES boards was high, but not that high. A few hundred, if I remember correctly.
Today, there are PAGES of results from a Google search for FPIES! The FPIES boards membership numbers have skyrocketed – over 2,000 in one group alone!
And still, doctors don’t/won’t/can’t help parents, and children are still misdiagnosed.
Obviously, more children are being born with FPIES than ever before in history, and obviously, the efforts of dedicated awareness-raisers the last three years has done heaps of good.
And clearly, there is still a NEED for awareness raising!
No parent should have to watch their child having an FPIES reaction and spend weeks – or months – with no answers, confusing diagnoses, while terrified to feed their child any food.
So while, yes, my family and I NEED to seek some normalcy in our lives, and yes, we are past those early days of “new diagnosis fear and confusion” by far, I find myself rededicated to the truth that FPIES Awareness (still) Matters.
We may be past those early days, but I still remember – with crystal clarity – exactly how I felt from July 17, 2012 through the end of that year. Those early months of our FPIES lives were the most excruciatingly horrifying days of my life.
I wouldn’t wish that on anyone.
FPIES Awareness matters.
Help spread the word.
Here are some links you might want to share. National FPIES Day may be over, but we can spread the word year round.
International FPIES Association
Jack’s Soy Reaction (video)
Grocery Shopping With Food Allergies
Walking in a Play Area (video)
Thank you for this post. It is food allergy awareness week here in Australia and I will be sharing FPIES info this week.
I feel very much as you do. My second child was diagnosed with FPIES in November 2012 at 5 months of age. I remember those early days trying to make sense of it all, and trying to find a doctor (I had self-diagnosed) and even as a doctor myself struggled to find a doctor here to take me seriously. I find it hard going on the boards because we are coping much better with FPIES these days. Even if one day Caleb outgrows it, the scars will never disappear. And now I have a new 4 month old. I really hope we are not about to start our second FPIES journey.
Hi Emma! Wow – you’re a doctor and you STILL didn’t get taken seriously? Ouch! That doesn’t bode well for the rest of us. Please, share as much info as you can. The FPIES world needs as much help as it can get!
I’m glad someone understands what I was trying to say; I was worried people would be hurt or offended by the sentiment. But it is hard to be on the boards so much once you get your FPIES feet underneath you.
I really hope your precious 4 month old doesn’t have to go through the FPIES journey, too. And I’ll pray Caleb outgrows it soon. Hugs, amazing mama!