Well, it has certainly been a while since my last blog post. Today is Global FPIES Day so I figured it was a perfect time to share an update. A lot has happened in our lives over the past 20 months or so, I’ll do my best to just give the abridged version. The bottom line is that E is doing wonderfully! He has officially passed trials of rice, dairy and egg! These foods have opened up so many new foods for us and we are so excited! The picture above is of E eating rice pudding. This is a treasured family recipe that contains rice, dairy, and egg (and not much else) – all things that he couldn’t eat 6 months ago! It makes my heart so happy to see him enjoying the same comfort foods that my grandmom used to make for me. The only problem is that now I have to share 🙂
So, if that was all you wanted to know, please feel free to stop reading now. For those of you that are in the throes of FPIES or really bored, I’ll do my best to elaborate on what has happened since my last post, how we made decisions, where we are now, and our next steps.
It Gets Easier
First, I have to tell you that life with FPIES gets easier. It’s hard to believe and I don’t want to minimize the struggles of others, but please know that it often does get easier. At least it did for us. Or maybe the rest of life gets harder. From the first minute your baby is outside of your body, all you are focused on is feeding and nourishing that child. Often you are starting your first nursing session in the delivery room. Your child is so delicate and initially has so few needs but food is the most important. As a new parent I spent all of my time feeding or worried about feeding E. Every two hours from the time the feeding starts, newborns are ready eat. E was a lazy eater and a nursing session took about an hour. So he was eating every other hour. I’m pretty sure all I did was feed this kid for weeks! As your child gets older there are more needs you have to meet. When you don’t have the food one down, this becomes very stressful. Now you are just piling on the stressors.
For us, we got to a point where we had identified E’s triggers. He was no longer reacting to new foods and we had determined that there were 7 foods to avoid. Don’t get me wrong, a few of the 7 were big ones – Dairy, Egg, Soy; and a few were easier – Rice, Oat, Coconut, and Shellfish. As difficult as it can be to avoid entire food groups, this knowledge was a huge turning point for us. It was almost like we could move on with our lives, which was good because our lives were moving on.
Feeding was no longer our biggest stressor
We spent November and December 2014 going from food challenge to food challenge. I thought it was a stressful time – always on the lookout for symptoms, right in the middle of holiday celebrations. In January 2015 my dad suddenly passed away. I could write an entire post about this event, but almost two years later I still don’t feel ready to do that. Suffice to say that E’s food allergies took a back seat to almost everything else. The grief was so overpowering that I didn’t really have the energy for anything else. As I mentioned in my last post, I attempted to use some easy food trials to boost my mood, but the fails were even more devastating. I had to shift my focus away from E’s food allergies and get myself and my family through an awful transition. But this was possible because all I had to do was to avoid the 7 foods that were E’s triggers. In fact, being able to wrap my head around that one constant was almost comforting. So we moved forward in life while treading food allergy water.
We got through the initial grief and were faced with other distracting stressors – we bought a house, embarked on potty training, and I hunkered down to finally finish my dissertation. We decided not to force the food issue until we were mentally ready, which took a while. I mean, why mess with the one stable thing in our lives? All of the brain-washing, I mean teaching, that we had been doing since we entered the allergy world was paying off. E was old enough now to know about his allergies and was really good about making sure food was safe before he eating it. He also has some pretty awesome cousins who looked out for him and made sure to keep him safe at family parties. He was used to having his own safe version of party foods and didn’t seem to be bothered by the fact that his cupcake was different from everyone else’s.
Back to Trials
We enjoyed homeostasis for a while but eventually we felt ready to tackle some of the lingering questions we had about the winter’s food challenges. Remember that he passed oat, rice, and dairy challenges in the hospital but then had weird, possibly chronic reactions (lethargy, rashes, etc) once we continued the food at home. We ended up pulling all of those foods and just waiting it out. In the spring we had an appointment with E’s allergist, who we love. She suggested approaching the food trials a little more realistically. For example, it wasn’t really necessary for him to tolerate a 1/2 cup of rice every day for 2 weeks. Rice isn’t that important to our diet and he was unlikely to eat rice that way in “real life.” Her thought was that we should be a little more gradual, introducing the foods every couple of days, and allowing his body to get used to it over time. It was also probably ok to stop once he was eating rice a couple of times a week or two to three days in a row. She also thought it would be helpful to back up the dairy trial to baked dairy. When you bake food proteins, the heat breaks them down. Sometimes they are broken down enough that the body doesn’t realize it is the same protein that should cause a reaction. It also allows the body to get used to the food before introducing the full protein.
So last summer we tried baked dairy. Jonathan made white bread with cow’s milk. E ate it everyday in his pb&j and it was great, no problems. We decided that dairy baked into a matrix is safe. (A matrix means that the dairy is pretty much unidentifiable when the food is eaten, like the milk that is mixed into the bread. You can’t look at the bread and see dairy, but it is there, though presumably pretty broken down.) We got daring and tried pizza with melted mozzarella on top. So, baked, but not for very long and not into a matrix (it was still identifiable in the finished version). E loved pizza! And still no problems. As a last step to our cooked dairy experiment, I made macaroni and cheese. E also loved macaroni and cheese! However, this one was not as loved by his body. After a couple of days, he had awful diaper rash. The kind of rash that resulted in both of us crying during diaper changes. So we pulled dairy that was not officially baked into a matrix.
Ethan’s 3rd Birthday Cake – a sandcastle theme with soy and dairy ingredients.
We waited for the rash to clear up and for everyone to feel emotionally ready again and and then tried baked soy. After the baked dairy pass, I felt good that baked soy was going to go well. I even kicked off the trial at his birthday party by putting silken tofu and soy milk in the cake. Thankfully he didn’t react that day, but after a few days we started to see the rashes again and decided that baked soy (and so all soy) was a fail.
So much of the FPIES literature says that the symptoms go away by age 3. Here we were kicking off 3 with a soy fail and a recent dairy fail – it was disappointing and disheartening. It took a while for us to feel emotionally ready to start another trial. We decided to go with rice this time, following the doctor’s recommendation of a very gradual introduction without pushing to large quantities every single day. I don’t know if it was the gradual approach, the fact that we were finally officially out of diapers, or if E had truly outgrown the allergy since the previous trial, but he passed the rice trial! We felt confident that any amount of rice that he would eat would be safe, including several days in a row of Rice Krispies. We still don’t eat a ton of rice but crossing a food off of the list was incredible!
The rice pass gave us the confidence that we needed to move forward with more trials. We embarked on a baked egg trial. Egg is a big one – it’s in so many foods. We decided to dust off our strict food trial protocol for this one. So we did 12 days of baked egg, mostly in the form of banana muffins. It was a success! We jumped into scrambled eggs, saw no reactions and haven’t looked back! E now regularly enjoys eggs in baked goods and loves scrambled eggs. I had forgotten how easy it is make scrambled eggs and I’m thrilled to have an easy go-to meal on hand for days when I don’t feel like cooking.
Scrambled Eggs get Two Thumbs Up!
We were on a roll and it had been over a year since the macaroni and cheese reaction so we felt ready to try dairy again. We knew that baked dairy was safe so we started with cheese this time. I figured it was still somewhat processed but got at “raw dairy.” Again, we started off with the strict food trial protocol. We had a couple of little issues related to sticking with the protocol and some questions about whether symptoms (coughing, runny nose, lethargy) were related to the trial, seasonal allergies, hot weather, or just being a on vacation. We didn’t have enough data to clearly blame the cheese so we added some flexibility into our approach. We stopped the cheese for a couple of days, started again, took breaks when we needed to. We were pretty sure the other factors were the cause of the symptoms but dairy is everywhere and wanted to be sure. Once we got to a good baseline, we restarted a strict protocol, this time with a cup of milk.
E was nervous to drink “cow’s milk.” How many three-year-olds specifically state the source of the milk? After his first taste he declared that it “tastes just a little bit like cow” and finished the cup. However, the next day he wasn’t really interested in drinking it and asked for hemp milk instead. I guess milk is more of an acquired taste than I realized. In a desperate move to get through the trial, I added sugar and cocoa and we continued the two week trial using chocolate milk. The trial was a success and it only took a couple of days to make it clear that he was no longer going to get chocolate milk every day.
Celebrating a Dairy Pass!
The lack of reactions to milk opened up a ton of doors! E’s mostly healthy diet took a nosedive as we introduced to him to the world of cheese, yogurt, and ice-cream. He is so excited for this new safe food and often tells strangers that dairy is safe (which I then have to explain). Every time he tries a new dairy-containing food, his eyes light up and my heart melts a little.
So, that’s the brief food-allergy related synopsis of the past 20 months. Three foods (2 of them biggies) off the list! The FPIES journey isn’t a straight line, that’s for sure. We had a lot of false-starts and set-backs, but we got there. We are now still avoiding 4 foods, including soy, which is more pervasive than most people realize. But we are optimistic about the future.
In other news, we are settled into our new home, which we love, and I finally defended my dissertation. Most excitingly, E will become a big brother any day now! E is now 4 years old, completely out of diapers, incredibly verbal, fairly independent, and has outgrown many of his allergies. Starting over with a newborn is daunting in many ways, especially knowing that we might be jumping back into the early days of FPIES. I’m trying to be optimistic about her living an FPIES-free life, but I feel prepared this time. I know what to look for, when to get help, and what to expect.
We’ll hold off on new trials for a couple of weeks until we get through the initial excitement of the baby’s arrival. However, I am determined to do a shellfish/shrimp trial before Christmas. Our family has a tradition of shrimp scampi on Christmas Eve and I really want E to get to partake this year. As for the other foods – we’ll get to them when we are ready.
I’ll try to check in again soon to let you know about how our little princess is doing and when we are ready to attack the rest of E’s list.
If you are an FPIES-parent, please hang in there. The beginning is so very difficult but the victories are so very sweet. Most children have the results that E has had, you’ll get there.
I also have to send out a huge thank you to all of our family and friends. We are so lucky to have so many compassionate and caring people in our lives. They do whatever they can to keep E safe and me sane. So many are willing to provide safe food or change a menu for E. Your willingness to accommodate my son means more than I can ever express.
So Much for Our 4-Year-Old to Celebrate this Year!