Ellie’s FPIES Journey – 1st Update

Do you ever just hear yourself saying the same thing over and over and over again? If you have kids, you probably do quite frequently. Well, it’s my turn to say for the 59^th time, “Here we are again with a change of plans for Ellie”. I feel like at some point Ellie’s story must get less exciting. No more trick twists or cliffhangers. Just a boring by the book, no surprises, story. But, knowing our spunky, adventure-seeking, joy of a girl that is Ellie, I guess that a boring story wouldn’t suit her.

Trialing ‘Splash’

I left you at the end of Ellie’s story with the plan to trial the new toddler formula, Neocate Splash, after her period of gut rest. So, not too long ago, we did just that. The first day she was so excited to have something different that she drank close to 2 ounces. I was ecstatic that she was showing interest this time around.

Then the next couple of days, Ellie’s reality set in. She drank maybe 1 oz the second day and refused it all together the third day. The fourth day I was able to get her to take a few sips, but Ellie was ‘all done’ shortly after tasting it. Oh, the frustration with no progress. Yes, I know, I shouldn’t expect a huge change overnight. I mean have you read our story?! But I still hold onto hope with each new step.

Allergist’s Intervention

The fifth day we happened to have a meeting with Ellie’s allergist. She was positive about the fact that Ellie hadn’t seemed to have a reaction to the new formula she managed to take. However, she wasn’t satisfied with her lack of interest in taking the new formula. After some discussion and deciding that Ellie was probably reacting to squash earlier and not the cucumber, we decided to retrial cucumber instead of the formula. I mean, she was ASKING for ‘cumber’ all the time. Why deny the child who has oral aversion something she is asking to eat?

‘Cumber’ for ALL

Well, Ellie loved getting to sit at the table to ‘eat’ with everyone again. She went through ‘cumber’ like nobody’s business for a couple of days. I was so thankful that my cucumber plants went crazy this year, so we had MANY cucumbers that had found a wonderful purpose. However, she still didn’t chew and swallow any of the cucumber. She took bites and sucked on it, then proceeded to spit it out and get another bite. We still have a lot to work on with her ‘eating’. She made it 5 days with cucumber and no FPIES symptoms to that point.

If only the symptoms stayed away beyond 5 days.

GI Reaction

Day 6 and Ellie started to have symptoms. I was determined to know for sure if it was just some GI reaction like her fructose intolerance (there is hardly any fructose in cucumber though) or FPIES. We continued with the cucumber.

Okay let me just stop for a minute and say, “Do you know how hard it is to continue giving something to your child that you know is making her not feel well?”. It sucks. Put in a more refined way, it is a struggle, both mentally and emotionally, to know I am subjecting Ellie to more discomfort, even for the sake of distinguishing which reaction she is having. Yeah, it sucks.

FPIES Confirmation – Again

Day 8 and Ellie no longer wants ‘more cumber’ and is ‘all done’ right away, which is leading me to an unfortunate conclusion. My heart sank. My hunch was confirmed, as I saw the main symptom in Ellie that clearly states FPIES. (Skip ahead if you are proper and don’t think potty talk belongs at the dinner table – sorry I’m a nurse, it’s second nature.) Ellie had blood in her poop again. My poor, sweet girl. 

(Okay proper people, it is safe to return. Thanks for sticking with me, I appreciate you, too!)

Caught Up

Well friends, that is where we are. I contacted the allergist to update her on Ellie’s recent reaction. Now we are in a waiting period again. 10 to 14 days of gut rest and recovery for Ellie. We are back to just her baby formula until the next food trial since we are still working with zero ‘safe foods’. Let me just point out that she will be two in September! Two years-old with nothing she can eat besides formula. Breaks. My. Heart.

Blueberry will be Ellie’s next food trial. I am hoping the blueberries will be so delicious and a bit easier to ‘chew’ and swallow versus the cucumber. Maybe they will not only be an FPIES pass, and tolerable with fructose, but she will also love them and start eating them! Hey, miracles happen, and I think she is due for one. I’ll just keep hoping and praying. Please feel free to join me!