OK, Quinoa…I Don’t Think We’re Done With You Yet!

I have to start this post with a gigantic THANK YOU. After yesterdays emotional ordeal, I was overwhelmed with the outpouring of support and encouragement! To go through a food trial for the first time is scary; to think it was unsuccessful is devastating. But to know that there were hundreds of people praying for us and wishing us well softened the blow in ways I can’t even begin to describe.

So, THANK YOU. You are awesome!

And I think I may actually have some heartening news to share! After much debate and deliberation, Darrel and I have come to the conclusion that quinoa may NOT be unsafe for Zac, after all.

So here’s how it works, in case you’re not “up” on FPIES. Typical acute reactions for an FPIES kid will show up 2-4 hours after food ingestion. They include vomiting, diarrhea, bloody diarrhea, lethargy and behavior changes.

Zac is a complicated FPIES child, in that he has acute reactions, but also has chronic reactions. And his acute and chronic reactions are not always “classic” – for example, even his acute reactions don’t show up in that 2-4 hour window. Usually they’re within 4-16 hours after ingestion.

For Zac, his reaction signs have always included some or all of the following: bloody stool, spit-up/reflux flares, vomiting, clinginess, sleep disturbances, eczema, developmental stalling, and sometimes acidic poop that gives him horrible diaper rashes.

So yesterday, when we saw the blood in the diaper, we naturally concluded he was having a reaction.

I reported our heartbreaking news to the other FPIES moms on the boards, and they all commisserated wholeheartedly with our quinoa loss. But then one mom, in an effort to be encouraging, asked if we thought he might just have an anal fissure. Sometimes bright red blood can come from that, as we have already experienced once before.

So we sat and talked about this idea for a bit, let it ruminate, and the more we observed Zac the more this new line of thinking made sense.

Yesterday, for the record, he had the best nights sleep he has had in many months. He taught himself to blow kisses at people. He started babbling again; something he had been doing but had stopped doing about a month ago (I was actually beginning to think he needed to be evaluated for Early Intervention!). He was not clingy in the slightest. He was happy and giggly all day. He had no spit-up or vomiting all day. And after that bloody diaper? He had no more poops the rest of the day.

Then, when I was eating mashed potatos at dinner, he screamed for the potatos and spent the entire meal trying to grab them from me! It suddenly dawned on me that mashed potatos probably look quite a bit like cooked quinoa flakes. Zac WANTED to eat quinoa!

Most FPIES kids are pretty good about not wanting to eat foods that trigger them. This isn’t an absolute, but a general observation a lot of FPIES Mama’s have made about their children. It’s so often true, in fact, that many moms will stop a food trial if their child refuses the food the second time they serve it to them, because many times when the child refuses the food it turns out to be unsafe for them!

So that’s a pretty good sign!

At bathtime, Darrel and I did our best to get a good peek into Zac’s heinie. This was made very difficult by the fact that Zac wanted to see what his brother was doing, and Jed was choosing to run around in circles. Consequently, there was an awful lot of rolling and squirming going on!

But it looked like there *might* be an anal fissure in there, which kind of makes sense considering he hadn’t had a BM for 5 days prior to yesterday! And quinoa has lots of fiber, so that could have “activated” his system to poop.

So, Darrel and I concluded that the quinoa trial is inconclusive! It still might be unsafe for him…but it is NOT YET a definite no-go!

We’re going to watch his diapers, and when we get a nice, clean, no-blood poop, we will re-try quinoa and see what happens then.

I worried, at first, that we were just clinging desperately to any shreds of hope. But FPIES is rarely cut and dried; this scenario makes just as much sense as the idea that he reacted to the quinoa – and it offers us a second chance at succeeding with a food.

As I’ve said before, sometimes with FPIES, HOPE is all you have! 

So thanks for being there with us through our sadness yesterday – and I hope you’ll stick around to see if our next quinoa trial proves us wrong!

__________

In other news, Jed is nearing the end of his early intervention speech therapy. They only cover him through 3 years old, and he’ll turn 3 in a few weeks.

So his beloved therapist is re-testing him with the same test she gave him during the initial evaluation. You know, the one that indicated he qualified for speech therapy?

Yeah. As of right now, his expressive speech is that of a FOUR YEAR OLD!!

And the receptive speech (what he understands) is still being tested (they ran out of time to finish that part of the test on Monday) and is already putting him at 4.5 years old!

Wowza!

I had no idea how effective speech therapy would be for him, but I’m ever so grateful for this experience. Having Jed chatting up a storm is breathtakingly fun; I LOVE to hear his little stories and finally SEE his thought processes in action!

The Summers’ Boys are not quite out for the count yet, folks!

Please pray for no bloody poop today, and another quinoa teaspoon tonight!

I am full of HOPE.