What Every New FPIES Parent Should Know (On Our 3 Year Anniversary)

Three years ago, on August 1, 2012, while standing in the hallway of the doctors office, we received our FPIES diagnosis.

Three years.

It seems like an eternity and a blink simultaneously.

In honor of this dubious anniversary, I’ve been re-reading the early posts I wrote about our journey. Remembering those early days is quite an emotional roller coaster for me; I’m amazed at how much has changed, and how much hasn’t changed at all.

A Bad Day, written on August 10, 2012, really shook me. Re-reading that story, I can clearly see that as a life-changing day for me. It’s a little unnerving to look back and see the fundamental change in my perspective at that moment, when I know at the time I didn’t really realize what I was experiencing.

Well, that post and My New Reality, actually, were the two posts that truly amaze me from that time. Both were astonishingly prophetic, and both clearly show a new FPIES mom transitioning into a new way of looking at life…adjusting to a world tipped on its side, thrown into a tailspin, and reversed from everything she had known before.

As for prophetic, I found myself laughing at the fact that, three years ago, I predicted that my salary would not help us handle the copious financial challenges presented by FPIES, which I wrote about only recently when sharing the solution we found to that problem.

I also predicted that Zac would be a very corn-sensitive child, which scared me to death – and has also proven very true.

Those early days of our diagnosis were some of the most stressful and frightening of my life, and re-reading that part of our journey made me consider some things I wish I had known then.

I’ve already written a couple of “tip” posts that are still good. If you are new to FPIES (or severe food allergies and intolerances), you should absolutely read Ten Things I Wish I Had Known When My Kids Were Diagnosed With Food Allergies, and Tips to Thrive at Complex Child Magazine.

But there are a few more things I’ve thought of in this anniversary re-reading that I want to share. So here it is:

What Every New FPIES Parent Should Know

1. FPIES Is A Marathon, Not A Sprint. An incredible FPIES mom told me that at the beginning of our journey, and repeating that mantra has helped enormously over the years. She’s right; there is no quick fix for FPIES, and the only way through it is inch by inch, day by day. You can’t speed up the process of your child outgrowing FPIES by fervent prayers and wishes, or by anything you do (other than avoiding trigger foods). The only thing you can do is to settle in for the long haul and pace yourself. Which brings me to…
2. The Panic Doesn’t Last Forever. When they first get the diagnosis, it’s common for FPIES parents to, well, freak out! “What next? What’s going to happen? OMG How do I feed my child? Will we end up in the hospital again? Why doesn’t the doctor seem to know what to tell me? Why does all the information seem to contradict? HELP!!” It doesn’t feel like it, but that panic doesn’t last forever. Over time, whether days, weeks, or months, as you read and learn more about FPIES, you will get your feet back underneath you and grow more confident about how to cope with this rare disease. Panic isn’t sustainable, and knowledge is the antidote to fear.
3. Don’t Be Surprised if Your Child Has MORE Than FPIES Going On. It seems that many parents with FPIES children discover concurrent rare diseases in their children, like MCAD, MTHFR, or other food intolerances like Fructose Malabsorption or Histamine Intolerance. Of course, many FPIES kiddos simply have just FPIES, but if you are struggling to find baseline and not seeming to make any progress, keep in mind that some other issue may be causing the problem. Don’t look at your childs health strictly through FPIES Eyes.
4. Pay Attention to Your Marriage. On the day you get your diagnosis, you may have a marriage made in heaven or a marriage on the rocks. Either way, and despite how terrified you may be at that moment, make a concerted effort to start putting some serious time and attention in to your marriage. FPIES, just like any chronic health condition, WILL put a serious strain on your relationship. Make the effort to make time for your spouse, keep the spark alive, and keep your bond strong. Darrel and I have a great  marriage, but for the last year we have struggled heartily. Thanks to FPIES, we had developed bad habits and had small miscommunications and hurts that had never been dealt with. It has taken concerted effort to get us back on track; far easier would have been to not assume our marriage was strong enough that it could survive without any TLC for the last 3 years and to have put a little effort into our marriage consistently over that time frame.
5. You’re Still A Normal Parent. It is easy to become so mentally caught up in FPIES and other food issues that you can start to feel like medical personnel – and not a parent! It gets easier to balance those two roles, but at first, try not to forget that you are a special needs parent. Specifically, don’t forget to implement discipline. Many times a childs reactions involve uncontrollable bad behavior; Jed is especially prone to this. It’s tricky, but I have to balance the knowledge that he isn’t truly being ‘bad’ of his own volition with the need to impress on him proper behavior and self-control. I don’t always get it right, but I am always aware of the fact that I can’t let bad behavior go unnoticed and condoned, no matter the cause. Whether my kiddos outgrow their food issues or not, eventually, they will be adults; they need to know how to be the best adults they can be. Sometimes I simply have a conversation with him about what he did and how he might react next time (leave the room when he feels the Meanies coming on, etc.), and sometimes I actually have to implement some sort of punishment (time out, etc.). Don’t worry, though; it’s not all bad stuff to be parents, which is why you should…
6. Take LOTS of Photos and Videos! So many FPIES moms have commented, a few years into the journey, that the first year or two of their childs lives are a blur in their mind. Such stress and anxiety, combined with the all-too-common lack of sleep, means new FPIES parents often end up somewhat forgetting those precious baby days. Keep your camera handy, and any time your baby does something cute, record a video or snap a photo! Cute faces in the grocery store cart? SNAP! Silly babbles in the living room? RECORD! One day, your child will (likely) have outgrown FPIES, and you can resume being a 100% normal parent. When that happens, it’s good to be able to look back and remember that even during the darkest days, there was still joy to be had with your sweet baby. Photos and videos will help you remember those sweet, tender, NORMAL moments. I know most parents these days are shutter-happy, but as an FPIES parent, it’s all too easy to stop doing things you were doing while coping with this new reality. Don’t stop taking pictures. They’ll be more precious than gold in just a few years. (And don’t forget to BACK THOSE PHOTOS UP in at least two places, no matter how busy you get!!!)

This is by no means a comprehensive list of things I wish I had known in those early days, but these are the things that often don’t get mentioned.

For all those new parents staggered by their recent FPIES diagnosis, let me close with these thoughts: take a deep breath, hug your children, hug your spouse, plan something fun (no matter how hard it is to arrange it), and never forget that you are NOT alone. Us FPIES veteran parents are still here, sometimes still dealing with it, and still remember exactly how we felt in those early days.

We can help.

What do you wish you had known in the early days of your diagnosis?

For more tips on living with FPIES, Fructose Malabsorption, and Food Allergies, plus some great recipes, please subscribe here!