The Great Beef Re-Trial of 2018

We are approaching the 3 year mark with our FPIES baby, Matthew. It's been over 24 months since his last reaction - and so the time for re-trialing is now upon us.

The latest guidelines (released at the FPIES 2018 Conference in Philadelphia) advise waiting 12-24 months after the last ingestion to re-trial, depending on the child and the severity of the reaction.). Previous to that, the most comprehensive paper published was the "International consensus guidelines for the diagnosis and management of food protein–induced enterocolitis syndrome: Executive summary—Workgroup Report of the Adverse Reactions to Foods Committee, American Academy of Allergy, Asthma & Immunology"

A few weeks ago, after an accidental ingestion of beef at daycare (1 mini meatball) with no reaction, we decided to re-trial beef. I asked the daycare for extra meatballs to continue giving them to him, which they did.

I was nervous the entire day after I got the call from the daycare, but so relieved when nothing happened, even after having 2 meatballs for dinner! Of course, I watched him like a hawk every second he was awake, and monitored him closely at night. I had a sliver of hope he would pass, but for some reason, felt very positive about the situation (how very unlike me!)

(I love our daycare, but was somewhat concerned when they asked me on the phone if they should treat Matthew - somehow forgetting it is a non-IgE mediated allergy. I reminded them that epinephrine auto-injectors like EpiPens don't work for FPIES - plus, he didn't have one! Of course, for a week afterwards they kept thinking he was allergic to wheat for some reason, which always scares me because if they try to give him gluten-free products to avoid wheat, they'll most likely contain rice, his actual worst trigger.)

Then, we spent over 2 weeks giving him beef every single day. Why 2 weeks, and not 1 week? In his initial beef trial, he reacted on the 13th ingestion. That's right, the 13th!!!! It was a bit of a fluke that we caught it, because we had already moved onto the next trial, and most certainly would have blamed that food for the fail, except that he hadn't yet ingested it that day, and I gave him beef first thing in the morning. So this time, I wanted to do at least 14 days for the re-trial, even knowing it might be overkill. I had a sliver of hope that he would pass, and each day, that sliver grew until it was the size of a plank, and then a tree!

And the result - he passed!

Matthew loves meatballs and hamburgers (and watching daddy use the barbecue!), he's not sure about lasagna, but is fine with bolognese sauce - if he's distracted. I think it's the texture of minced beef that he finds strange. He loves beef hot dogs and pepperoni, as well as stir-fried beef, if it's soft.

Mostly, I was excited about this beef pass because beef is daddy's favourite and it will be so nice to be able to prepare one meal for everyone again!

More accidental rice ingestions!!!

There is a great little izakaya we frequent, and we all love their marinated edamame. Because Matthew had not previously reacted to edamame at home, I ensured the soy they were using for the marinade was wheat-based and did not contain rice.

We were therefore surprised, when, on two separate occasions, Matthew developed a rash around his mouth within 30 minutes of eating shelled marinated edamame at a restaurant near us. On these occasions we had advised the server of the rice allergy and was told there was no rice in the dish. He had been previously sick so I wanted him to try them one more time to be sure the rash wasn't due to something else. Yesterday was our third attempt and I specially asked for the ingredients of the marinade which we were then advised contained sake, mirin, bonito, soy and dashi. My heart stopped - both sake and mirin are rice based! This might have explained the rash but he didn't have an FPIES reaction. However, on the third ingestion, there was no rash and no FPIES reaction either.

We looked over and he was happily devouring the edamame - he seemed to be quickly getting better at getting them out of their shells. He had specifically asked for this dish at this restaurant and it broke my heart to take them away from him. I watched him like a hawk, and despite having a whole bowl to himself as usual, this time no rash appeared and no FPIES reactions followed.

I'm not sure what this means.

Is this what outgrowing an FPIES reaction looks like?
Is that what happens when an FPIES reaction turns into and IgE allergy?
Perhaps there were simply not enough proteins in the sake and mirin to cause a full-blown FPIES reaction?

The real question is: do we keep allowing him to ingest it, to habituate him to it and will this help with re-trialing? My gut says strict avoidance is the only way, but the fact that he didn't develop a rash on the third time is getting my hopes up.

Accidental rice ingestion!

As Hallowe'en approached, I was being extra careful about any accidental ingestions. Matthew, dressed as a monkey, loved Hallowe'en and thankfully didn't really understand that what he collected was edible! In actuality, I think he just enjoyed the experience of Hallowe'en: making some arts and crafts, baking Hallowe'en cookies, visiting Riverdale Farm including their Boo Barn, carving pumpkins (he named our Jack O Lanterns Joe and Moe), dressing up and going house to house and seeing all the cool decorations and saying "Trick or Treat!" It wasn't at all about what he collected - he never asked about his candy after we came back. He was more interested in talking about the big raccoon he saw (which at first he called a beluga, LOL!) Now, he is talking about Santa and Christmas every day and I know it's only a matter of time until he demands what is his.

So, perhaps because I have been avoiding rice for so long, I seem to have developed an aversion to rice myself!!! I literally shrink back when I see it. Rice was a prominent staple in my life and in my husband's before FPIES. But now when I see it, I feel the pain of Matthew getting so sick. Classical conditioning? That's why it surprised (and crushed) me that I am the one who accidentally fed Matthew rice.

I have been more sleep-deprived than normal for a variety of reasons. A few days ago, on the weekend, Matthew said he wanted waffles. I knew hubby had put some in the freezer, so I made a couple of blueberry ones. I thought it strange that they weren't the Original flavour that usually buys but then I remembered he and I had some a couple of weeks prior to that so he bought blueberry. However, I did have a nagging feeling about those pancakes. They weren't in the box - we had to throw it out to fit it in the freezer - so I couldn't check the label. Now, normally, I wouldn't risk it. But, sleep-deprived me thought back to when I ate some gluten-free (read: rice flour) waffles and didn't think they were blueberry, so that meant, these waffles were not the ones with rice in them. (Even now, I am wondering how I could have thought that?) So, rather than wake (my also sleep-deprived) hubby up to check, I gave Matthew the waffles. The day unfolded normally.

After Matthew went to bed, hubby opened the freezer and noticed a full box of Original flavour waffles that were still unopened. He said "I thought you gave Matthew waffles for breakfast?" (Yes, FPIES parents discuss all food that is given!) I confirmed that I gave him the ones that were "already open, in the bag". He blinked at me in disbelief and then said in the nicest possible voice "Those were the gluten-free waffles". I froze. I felt a pain in my chest. I couldn't breathe and my eyes opened wide. Hubby started walking towards me and I burst into tears in his arms. "I can't believe I fed him rice! I'm a terrible mother. I'm so sorry!" He reminded me that there was no reaction, and that everything was ok and it took me about ten minutes to stop crying and calm myself. Usually, Matthew's food is kept separate but in the freezer, labeling is even more important.

My Facebook FPIES support group were so sweet, reminding me that it happens to everyone and that, it might be the beginning of him passing rice. Some urged me to re-trial, but I just haven't been able to. I don't want to hold Matthew back but I'm too terrified of a reaction and still plan to wait until the in-hospital trial at 3 years old. I don't think I could live with myself if I fed him rice on purpose without medical supervision and he still reacted.

You're Not Alone - There is Light at the End of the Tunnel

This past week, a new mom sought me out because she believed her child might have FPIES. She asked me to meet her for lunch. She was very kind and sweet. She said my blog had helped her "immensely". I was so touched.

I answered all her questions, as best as I could. I gave her some recommendations and pointed her to some resources. But I told her that support was the most important thing at this time - her and hubby needed to be on the same page, and she needed to have a safe place to discuss FPIES. As such, she joined a few FPIES groups on Facebook.

If there is any advice I can give, please comment and let me know. It would have meant the world to me to have a BTDT parent to talk to about it. In the case of this new mom, I was thrilled that she lived quite nearby as well and offered to help her any way I could. I also think it would be nice to meet another couple with a baby with FPIES and for Matthew to have a friend with FPIES so as he grows up he wouldn't feel so different. Any play-dates would be a dream come true! No need to remind people to wash hands, eat in one place, avoid cross-contamination, clean food areas immediately, not feed any trigger foods, watch for reactions, continually explain what FPIES is etc.

Her anxiety and barrage of questions reminded me of myself, brought me right back to those days, early on, and reminded me also of how alone I felt. In a way I felt lucky because her son's case seems to be more complicated (chronic) than Matthew's (acute). But, it also highlighted how much better I feel now. If there's any advice I can give you, and I know you might not be able to accept it right now (because I couldn't at the time), but just know you are not alone and there is light at the end of the tunnel. I do hope this blog helps you too.

A surprising new way to eat!

A New Trial Protocol: no more trials!
At 18  months, our doctor recommended that we "just feed Matthew everything now" and not to trial new foods per se (obviously we continue to avoid our known triggers, rice and beef, and oats as well). After living with trialing so precisely for so long, it took me several weeks to even process that information and figure out HOW to just feed him like non-FPIES families do every day. It sounds a bit strange, that I didn't know how to feed him without trialing! After about a month of worrying, I decided that it was best to just take the plunge. So far, he is doing great! No reactions! (We are still dealing with eczema.) It was quite emotional for me to take him to a restaurant and let him eat! It felt so unusually "normal" to just tell the server "no rice, beef or oats", just like a regular kid (with regular allergies!) Of course, we did get the "Rice? Whose allergic to rice?" line, and also the "whoa, weird allergies!" comments but I took it as a "teachable moment" and educated them about FPIES.

Re-trialing
Our allergist has recommended that we delay re-trialing until he is 3. The guidelines say to wait at least 12-18 months after the last ingestion, however, she is reading more on FPIES now ("to keep up with me", she says!) and feels it best to err on the side of caution and delay longer. I was pleasantly surprised!

Veggie Fritter/Pancake

We are lucky that Matthew now has quite a few safe foods - but as we are following a new trial protocol where we offer all safe foods every day the cooking can be quite overwhelming. So I decided to make a few recipes where we combine safe foods. It felt so weird to cook a recipe; we are so used to feeding him single-ingredient foods! Luckily he loves these.

They are somewhere in between a fritter (not having batter per se) and a pancake (not fluffly per se) but are a super healthy treat for any kid and a great use of leftover veggies!

Combine these veggies in a large bowl (optional: you can saute the broccoli and cauliflower to soften beforehand, but allow to cool):

• 1 cup finely diced broccoli (I used the stalks, once peeled)
• 1 cup finely diced cauliflower (again, I used the stalks)
• 1 cup grated carrots

Add these ingredients to the bowl and combine well:

• 1 large egg
• 2 tbsp plain yogurt (I used a greek yogurt)
• 1/2 tsp salt
• 1/8 tsp pepper

In a separate bowl, combine these, then add to your mixture and mix:

• 1/2 cup whole wheat flour (or safe flour, but not coconut flour)
• 1/2 cup cornmeal
• 2 tsp baking powder

Fold into the mixture:

• 1/2 cup grated cheese (I used mozzarella or cheddar)

Heat your safe (olive, coconut) oil in a frying pan.

Form small balls of the mixture and press them flat to fry on both sides.

One Year In!

Well, it's been a big month for us.

Matthew turned one, he started at daycare and consequently, he got a cold - he's been congested for over two weeks now! He's also able to take a few steps! He says quite a few things (go-go means yogurt, ba-mama means banana, he makes the sounds of an elephant, owl, cat, dog) and understands even more. Recently he's started laughing at his bodily noises, his tummy grumbling, burping and farting. He loves it even more when I imitate those noises! He's such a joy - he absolutely loves music (especially piano and guitar, jazz and classical) and indicates he wants us to turn it on (by bobbing his head) all the time, including the minute he wakes up or enters the house.

We have also successfully trialed soy! Doing a trial whilst the baby is sick is not recommended. I couldn't tell if the mucousy loose diapers were from the illness or the soy - but as he starts to feel better, the diapers have cleared up while I am still giving soy. No vomit, so it's a pass! On to beans.

Starting Matthew at daycare was so heart-breaking. He started having separation anxiety the week before we started, so I knew it would be heart-wrenching. He was absolutely bewildered and terrified as I walked away. Of course, he had also started saying "mama" the week before, and what had been the sweetest sound to my ears, now hurt my heart as he called for me as I walked out the door. When I picked him up, his eyes were all red and puffy. Today is the first day his daycare is making a special safe menu for him, and he is not eating my food, so I'm fairly anxious about that! What if he reacts? What if he can't chew it? What if he doesn't like it and doesn't eat enough and is hungry?

To make matters worse, putting him down in the evening has become difficult - he is afraid I am leaving him every time I put him in the crib and walk out, including during his middle of the night wake-ups.

I know it will get better, and I know he won't remember this, but it's so heart-breaking!