I left Wyatt’s doctor appointment last week feeling worried about his diagnosis, but confident that Jeff and I would be able to manage it well.
And then I turned to Dr. Google. At first, reading FPIES forums made me feel better; I read so many other stories about FPIES babies who had reflux/ colic/ sleeping challenges during their first few months of life. But the more I read, the less comforted I felt. I canceled my FPIES Google news alert almost as quickly as I created it, and I wish I could block my PubMed access. I usually feel like knowledge is power when it comes to health issues. But with FPIES, I’m not sure that’s the case.
We’re already paranoid. Every time we feed Wyatt we wonder, “is this food going to poison him?” I can’t relax until a full two hours go by after meals. I just sit and watch his monitor while he sleeps, waiting and praying.
Or doesn’t sleep…
Every cough causes me to jump, with each burp I hold my breath. He should react the first or second time he has a new food, but with eggs it took 5 or 6 times, so I feel like we never know if a food is safe.
As far as introducing new foods, his allergist says to continue doing what we’ve always done – one new food every 4 days. But all the FPIES info suggests a much more conservative approach – one new food per month and only 1/4- 1/2 teaspoon at a time. Just like all things that come with parenting, there is no clear answer.
Right now, we’re completely overwhelmed. We’re counting our blessings that Wyatt has been able to eat so many foods without having reactions (much more than most other babies with FPIES). Instead of going through the stress of giving him new foods, we’re just getting creative with safe foods.
Diana’s vegan green monster muffins were a hit! I subbed cow’s milk yogurt, added a banana, and skipped the nuts, lemon, and sugar.
And instead of learning every single thing I can about FPIES, I’m taking a break from the internet. I’m just not ready to process all of this information yet.
We’re going on a week-long vacation in a couple days, and while it’ll be nerve-wracking being away from Wyatt’s doctor, the timing really couldn’t have been better. I’m looking forward to spending uninterrupted time with my little family. And maybe, just maybe, we can be distracted enough to momentarily forget about FPIES.*
*We’re not being totally reckless and ignorant. We’re bringing all of Wyatt’s food and we’ve made contact with the medical staff at our destination, and they’ll be able to treat a possible reaction.
Boy, a lot can change in a week. Last Friday, I suspected Wyatt had tummy issues and this week, we have a firm diagnosis.
On Tuesday, we met with a pediatric allergist. She reviewed his medical history and did skin allergy testing for the suspect foods- carrots, zucchini and yellow squash, and eggs (she didn’t test him for strawberries since he’d be eating those successfully for over a month). Thankfully, all were negative.
She said there was a small chance that he could have this rare condition called food protein-induced entercolitis syndrome or “FPIES”. FPIES is a gastrointestinal allergic reaction to certain foods. After ingesting a trigger food, someone with FPIES experiences severe vomiting about two hours afterwards. It can be life-threatening because the vomiting can lead to low blood pressure and shock in infants (source). Unfortunately, there’s no test for it. Regular allergy tests can’t detect it. The only way to know if a food is an FPIES trigger is to eat it and see what happens.
Wyatt’s symptoms are textbook FPIES reactions, but his trigger foods are not typical FPIES foods at all. In fact, he’d been eating many common FPIES triggers- milk (in the forms of yogurt and cheese), rice, oats, legumes- without issues. Any food can be an FPIES trigger, though, so the diagnosis was a possibility. His doctor said that there was only one documented case of FPIES to eggs, meaning eggs were most likely not a culprit so I could give him eggs again. She referred me to a pediatric GI doctor (her husband) and told me to follow up with her after I saw him.
Yesterday, I gave Wyatt eggs… and exactly 2 hours later, he started vomiting. I called the allergist and when I was on the phone with her, he vomited for the ninth time and passed out in my arms. She instructed me to call 9-1-1, the ambulance came, we spent the morning in the ER, Wyatt bounced back after getting IV fluids and steroids, and the allergist diagnosed my son with FPIES.
We spent this morning back at the allergist (and were told to cancel the appointment with the GI doctor) reviewing FPIES info and what we need to do to keep Wyatt from having reactions. The good news is that he should grow out of this by age 3. The bad news is that any food can cause a reaction, and there are so many foods he hasn’t eaten yet. I’m overwhelmed and scared.
We’re avoiding his known triggers- carrots, zucchini, yellow squash, and eggs. He’ll do food trials with these foods in a hospital setting after his second birthday to see if he’s grown out of these allergies. We’re also avoiding other common FPIES foods that Wyatt hasn’t eaten yet- soy and poultry. In one year, we will do food trials with those foods to see if he can have them.
Until then, I’ll be carefully studying food labels, being cautious when we dine out, and unleashing my inner germophobe when we’re in public since even trace amounts of these foods can cause a reaction. We’ll try new foods only on days when my husband is home because a reaction always means a trip to the ER, and I think one ambulance ride is more than enough for a baby. We have a special letter from his doctor explaining his diagnosis that we’ll bring everywhere since this condition is so rare. (The ER people kept trying to tell me he just had the “stomach flu”. Thankfully, his allergist stepped in.)
As for the big question: Is this why Wyatt was so cranky when he was younger? We don’t know the answer. He’s always had FPIES but, according to his doctor, so few proteins are passed through breastmilk. Still, I plan to eliminate his known allergens from my diet- carrots, zucchini, yellow squash, and eggs- but I really can’t eliminate the possible triggers- soy and poultry. I can’t eat dairy (due to lactose intolerance) and I refuse to eat seafood or red meat (due to it being disgusting), so avoiding soy and poultry would just leave me with nuts and beans for protein. And while that type of diet works fine for some people, that’s frankly not enough for me. I will start weaning him in 3 months, and it'll be interesting to see if his behavior changes after that. He's been great lately though, so I don't expect a difference.
If any of you have a child with FPIES or know someone with FPIES, can you please send them my way? They can contact me at runnerstrials(at)gmail(dot)com. There’s not much out there about this illness, so I’d really appreciate connecting with others going through the same thing.
Thanks so much for all your help, thoughts, and prayers!
Last week, after I decided I was ready to start training, I started looking for half marathons. I hoped to visit a friend and run a half marathon in her hometown, but those plans just aren’t meant to be this Fall.
I thought I’d stay local and run Thunder Road half again this year. I love Thunder Road but it’s also a pretty hilly course, so my chances of PRing in that race would be slim.
Then, as my parents were getting ready to leave this past weekend, I checked out flight prices to NJ to see if I’d be able to come up within the next couple of months (we’ve been alternating visiting one another every other month since Wyatt was born). Lately, flights to NJ have been ridiculously expensive. So, when I saw a round-trip ticket for $166, I literally clicked “purchase reservation” before the page had a chance to refresh. Naturally, the next thing I did was visit runningintheusa.com to see if any races would be happening during my visit! And what do you know? There’s a half marathon taking place 45 minutes away from my parents’ place.
I’ll be running the Seaside half marathon on October 14 (yup, it’s in the town where Jersey Shore is filmed. Maybe Snooki will be running postpartum).
Love racing along the ocean!
I am so, so excited for this race. I know the route well and it’s completely flat. I haven’t run a flat half marathon in over 3 years! This would be the perfect opportunity to PR. Except… that I essentially took 2 months off from intense running and the race is only 8 weeks away.
I want to break 1:40. That means shaving off 41+ seconds from my current half marathon PR. I’m really not sure if that’s doable after only 8 weeks of training. But there’s only one way to find out: train my booty off.
Here’s my plan. It’s based on SmartCoach’s recommendation, but with a lot of tweaks from me:
This is going to be my last round of intense training before trying to conceive baby #2. So, I plan to run hard and make every run count. I’m a little worried about meeting my tempo and interval run paces, and finishing my long runs strong because it’ll still be hot and humid here, so I may be spending some time on the treadmill.
Here goes nothing: 1 run down, 31 more to go ‘til race day!