Plantain, Salmon, and Coconut Water FPIES trial
Have you ever flipped to the end of the chapter or even the book to know the ending? Or read spoilers about a movie or TV show before watching? I will admit that I have been there done that, I HAD to know before going to sleep. I don’t feel sorry about it or regret it and I still enjoyed the rest of the book. Well now I want to flip to the end of this life chapter and know some answers or read the spoiler for this week’s episode. I want answers for Ellie and her FPIES journey.
Plantains Trial for FPIES
It’s hard for me to believe that I have so quickly performed a full turnabout with plantains. I started out not knowing how on earth you even cook and eat plantains. A lovely person who was familiar with cooking plantains gave me some great information! Then, with the help of Google to fill in a couple gaps of my knowledge, I conquered plantains.
Tostones – fantastically delicious. Plantain tortillas – success. Plantain chips – absolutely, we gobbled those up!
Ellie loved the new food as well. She willingly ate bites of tostones and asked for more the first day – this is HUGE for her. Second day she wasn’t interested in the tostones so we tried plantain chips. Again, Ellie enjoyed her different snack although was a bit more hesitant with her willingness to eat. This is where the downward spiral began.
Chronic FPIES Reaction to Plantains?
Back to Ellie waking up during the night, unable to go back to sleep, which means many hours of rocking, reading stories, singing, and eventually watching Stinky and Dirty, Tumbleleaf or Trash Truck when I just couldn’t keep my eyes open anymore. At least we have moved past the MANY hours of Cocomelon.
She also didn’t want to eat during the day, was cranky, had increased eczema, and overall just acting off – she didn’t feel well. Is this, by definition, a chronic FPIES reaction? Not exactly, although it could be the start of it. I finally decided to call it when her poos started showing some chronic signs, too.
This was supposed to be an easier pass, and I was so excited for it – like I am with every new food possibility. Instead, we had an unfortunate dashing of our hope. We even had one plantain left that I couldn’t bring myself to cook even for my husband and me, no matter how delicious we found them. It just isn’t fair to Ellie, and in this I will stand in solidarity with her. The plantain got beautifully ripe and then tossed to the compost – much like this plantain trial. But that just allows for bigger and better things, right?!
Why Coconut Water for FPIES Trial?
After a period of recovery for Ellie’s GI system, we moved onto our next trial lined up by our Registered Dietician – coconut water.
Throughout Ellie’s journey we have been careful of limiting potential germ exposure. The couple of times she ended up sick, she ended up in the hospital (you can read about that here). She reacts to Pedialyte and there just isn’t a safe electrolyte replacement fluid that we have found for her outside of an IV. Coconut water is not 100% the solution, but it can’t hurt.
Coconut water contains potassium, sodium, and manganese. Having a source of potassium, especially during a GI illness, would help with her electrolytes, and sodium would help with her dehydration. Like I said, not a complete solution, but improvement, instead of making her dehydration worse with increased vomiting (like Pedialyte – darn that dextrose).
Coconut Water Trial
I took Ellie’s beloved millet crackers and replaced the water in the recipe with coconut water. Who knew a touch of sweetness would improve these crackers? Probably anyone who has ever eaten any cracker in their life…. At least Ellie was still asking for and consuming her daily batch of crackers so I would know she was at least getting a small amount of coconut water every day, even if she refused the other presentations.
Refuse she did. Ellie is not an enthusiastic eater at the start. Knowing which variation of her four safe foods she is going to accept on any given day is about as sure of a bet as closing my eyes and drawing from a hat and hoping it is the daily winner.
I put a smidge of coconut water in her blueberry puree – that was acceptable a couple days. Her blueberry puree and juice popsicles got some coconut water, as well. She decided after a lick, it wasn’t for her this week. I, on the other hand, found them very refreshing. Some days she was up for playing with and then eating her ‘blueberry millet dough’ so that received the coconut-water-for-water swap as well. Then because she asked for it, at the end of the trial I gave her a tiny cup of coconut water. She won’t be asking for it again.
However, thanks to our tried-and-true millet crackers and her daily exposure to coconut water for a satisfactory number of days…drum roll please! I feel comfortable saying that coconut water is another safe for Ellie – she just doesn’t like it.
Detour for FPIES and Eating Struggles
Quick break to acknowledge those of you who also struggle during food trials to get your child to eat the specified trial food. Whether it is from oral aversion or because they just don’t like it (I hear ya little ones, I don’t like pureed broccoli either) it is an added struggle in an already difficult time. I’m sorry, and I want you to know you aren’t alone.
I See you – and I’m with you in this
It’s tiring and feels beyond hopeless at times. It seems unfair to not only be unsure if this new food will make your child react, but also to not know how to get your child to WANT to eat the food. The many different food preparations that you come up with are time consuming and seem wasteful when it is all left at the table or on the floor. The ways you try to hide the trial foods within a favorite food, just to be able to trial it, and then pray that it doesn’t turn them off their solid go-tos. I know the countless hours you spend playing with your child and their specific food to try to entice their interest.
You introduce the food numerous times and every time you are also wondering if you child eats enough this time, will this be time he or she reacts? FPIES is hard. Tackling other issues in conjuncture with FPIES seems insurmountable at times.
I won’t draw this out any longer, as you either hopefully do not experience eating issues with your child, or you experience this and are all too familiar with the associated emotions. If you are the former – I am so thankful you can’t relate. If you are in the latter group with me – solidarity, sister – you are always welcome to email me for an understanding ear.
Salmon FPIES Food Trial
In an attempt to introduce more protein into Ellie’s limit food options, salmon was up next on the FPIES food trial docket. Let’s just say after my two months of only eating salmon and apples (story here) I was not eager to have the fragrance of salmon (especially reheated – gag!) wafting constantly through the kitchen. I smell it often enough the couple times a month I cook salmon.
You might think, well after all that salmon for two months, why are you still eating it? Well, what a great question, and the answer is – the things we will do for our kids. In a surprise turn of events of things I share on this blog, it is something I do in particular for Rosie. The girl isn’t a fan of most meats but loves some good Alaska salmon that is provided to her specifically by her ever-thoughtful Bama and Grandad.
Well, I sprouted some real Alaskan root pride the day Ellie tried salmon and LOVED it! Ellie and Rosie both shared a plate and ate bites of baked salmon in olive oil and sea salt. I long to see more of these shared moments over food. It was something I never thought twice about until FPIES so rudely barged its way into our life.
Ellie had only a couple small bites of salmon since it was the start of the trial, and I try to introduce food gradually. She asked for more though which I took as a promising sign for the following days of the trial. For once she was getting to eat a food she enjoyed, and this trial was going to be a turning point!
Or so I hoped.
Dashed salmon dreams
The second day of the salmon food trial Ellie wasn’t interested in eating salmon. I prepared it a couple different ways to try to entice her, I swam salmon pieces through the air, I had Rosie eat them with us. With all of that, Ellie managed to put one piece of salmon in her mouth to just spit back out.
How? How can she go from loving salmon and asking for more one day to refusing it completely all the days following? Well, let me just remind you that FPIES is rude and I hate it!
Ellie’s typical chronic FPIES reaction started the first night, but to be sure I knew I had to keep going with the trial. Convincing your child to eat a food that you are fairly certain is going to cause them more discomfort is pure torture.
However, Ellie must have associated her reemerging GI symptoms with salmon because she refused to eat any more. By the time she had a diaper significant enough for me to confidently say salmon is an FPIES fail, I wasn’t even pretending that I thought she would eat the salmon I offered to her.
Another chronic FPIES fail for the book.
What is Next?
Great question, I would love to tell you. (Any other Elyse Myers fans out there? I adore her.) After a period of rest, coconut is up next for Ellie. Yes, many of you are probably thinking, but wait, you just did coconut water, doesn’t that count as coconut too? Unfortunately, not with FPIES and definitely not with Ellie, the FPIES oddball. FPIES is the body’s reaction to the proteins found in food, and it is thought that there may not be enough protein in the coconut water to say with confidence that coconut is safe.
Thankfully, coconut is available in many varied forms. Unfortunately, there is not as much variation in the flavor, so we will just mask it with blueberry to start. Coconut flour, coconut oil, coconut milk, and coconut manna (coconut butter) are all slated for their own upcoming trials, because Ellie is Ellie and reacts to anything and everything.
Obviously, if she fails one of them, we will just count coconut as a fail because I’m not going to put her through that when there are hundreds of other foods to try. Let’s just be optimistic though and plan on this next trial being a lot of variations of coconut and coming out the other side of it all with some new favorite foods to add to her millet crackers.
Until the next update, we will be over here going coco-nuts!