Consumed by Worry? Here's a checklist on coping with FPIES.

I read once that holding onto anger is like drinking poison and expecting the other person to die. I really believe that, but still find it hard to let go of some things. I think anxiety, for me, is similar, except there isn't even another person involved. Holding onto anxiety is like drinking poison.

I realize that I worry about a reaction after I feed Matthew anything. Every. Single. Time. What purpose does it serve? I know it's natural to worry in this situation, but at what point does it just rob me of the joy of being with him on days where we have no reaction (i.e. most days so far)?

My worrying doesn't protect him from a reaction. It doesn't make me better at dealing if he does have one.

My worrying probably means I'm pre-occupied all day long, instead of being present, and just enjoying my baby.

My anxiety serves only to make me FPIES-mom-hyper-vigilant for something that will happen regardless, if it's indeed going to happen. Hyper-vigilance is pointless because I'm pretty sure I'd notice him vomiting even if I was only regular-mom-vigilant!

Worrying makes me forget about normal things, like giving vitamin D drops, or making myself lunch. It causes me to stop going out for walks or exposing Matthew to situations where I can't control the environment (like socializing with other kids, or going to a party where there is food present). That's not being fair to Matthew (or myself, because as a breast-feeding mom, I really need lunch!)

If you're reading this because your child has FPIES (or you think they do) and you're endlessly, desperately surfing the web for help, as I do when I have anxiety, perhaps we need to do an exercise together. First, let's have a mantra we repeat to ourselves when our anxiety overtakes our daily joy. I could pick almost anything from this Positivity Blog on how to overcome worrying. Or I could just say to myself "You owe Matthew the best in this most precious time you have with him. Be the most present mom you can be. Don't let fear or anxiety rob you of joy or rob him of his mom."

Second, here are some concrete things you can do (at least, it's what I did) - because checklists help make me feel like I'm accomplishing something.

1. Immediately, go join  a support group. Facebook has a few: Facebook FPIES, Facebook FPIES Canada  or Sarah's FPIES Clubhouse. There is also one on Babycenter. This is important so that you can learn from other FPIES families that have gone before you and share in their wealth of knowledge and navigating these murky waters. You'll also need a welcoming place to ask all your newbie questions, like what's the next food I should trial? How can I add texture with the safe foods we have? Is this a symptom? Is this poop normal (and yes, include photos)?

2. Contact The FPIES Foundation and the International FPIES Foundation and ask for their support packages. While you're there, print off some articles from their site to give to your doctor if you think you'll need some backup. Usually it's under a section called For Healthcare Providers or Published Articles. This overview on FPIES for health professionals is a good start.

3. Start your search for a doctor to get a diagnosis (or rule one out!) or to help you manage the condition. If you're in Toronto or the GTA, there aren't many options, sorry. If you can, talk to your doctor about the use of probiotocs, fermented foods and stool tests like uBiome or Genova's Comprehensive Stool Profile to determine how to best support the microbiome of the gut and check for signs of infection, inflammation and imbalance.

4. Print off this list of food triggers and pass rates (it's ordered by pass rate, but you can also re-order and re-print by Food Type), compiled by FPIES families (since there is no published literature on the subject).

5. Print off a food journal or symptom tracker, examples of which can be found in the FPIES Foundation Toolbox. Keep it in the kitchen or wherever you are most likely to be able to update it throughout the day.

6. Make a food trial plan (in conjunction with your doctor if possible) and create a food calendar. Matthew is a delayed reactor (we can't assume he'll react on the first few exposures based on previous experience) so we do longer trials and we build in a break. You may not need to do this if your little one reacts more quickly. We use a Google calendar, but you can use any method you want, notebook, stickies etc.

7. Read some other FPIES blogs (linked to on the right hand side of this blog) to get ideas for recipes that are FPIES-friendly, see what Oral Food Challenges look like, and know that there are other families who are in the trenches just like you.

I plan to come back and read this post when my anxiety starts to take over.
I plan to say that mantra every day.
I plan to challenge myself to be the best mom I can be.
Fuck you FPIES. We will beat you. You will not rule even my mind.

One final note: My ex-boss James would challenge me to find a better way to move forward rather than to immobilize myself with worry, so I write this partially because I imagine answering questions he might ask me about what my worrying accomplishes and what it diminishes. I also write this for my husband, because he is so amazing at helping me through my anxiety and I want him to not have to worry about...me worrying.