Sorry in advance, but this is going to be a long, sad post.
Back in June we started a quinoa trial. We planned to pull the quinoa for three days and resume the trial to see if he reacted, and on the final day of the first stage of the trial he came down with an ear infection that required antibiotics.
So we stopped the trial, got him the appropriate medicine, and when it was all over decided we’d be better served to heal his gut with some broth. We decided on lamb, and I made him a whole bunch of lamb broth.
We started the lamb broth trial on June 15th.
When we were ending the first stage of the trial, he got a hold of a corn kernel (or perhaps some other accidental ingestion) and we had to wait a bit before resuming the trial so he could return to baseline. (That’s the last part I’ve already written about – sorry for the recap.)
We were able to start the reintroduction of lamb broth on July 13th, and it seemed to be going well! He was showing absolutely no reaction signs!
So on July 19th I got brave/insane and gave him some lamb MEAT.
He LOVED the meat. LOVED IT!! The little stinker couldn’t get enough of it! That was also the day I flew to work, and my Mom didn’t feed him lamb meat the next day. On the 21st, Darrel had the boys and he fed Zac lamb meat several times throughout the day.
Again, Zac LOVED it and gobbled it up…he also went from drinking about 50 ounces of breast milk per day to over 80 ounces in that day, and the subsequent days until I returned home.
But we didn’t make any connection between the increase in breast milk and the lamb meat; he started teething right about that time, so we assumed it was “comfort nursing” from that.
We persisted with the lamb meat trial through the week of Nana’s funeral, and stopped giving him the meat on Friday last week (the 26th).
Over the weekend, he only received lamb broth.
Monday of this week, we reintroduced lamb meat…but after chatting with a fellow FPIES mom I had learned that the proteins in the lamb meat BROTH and the lamb MEAT were identical. So I assumed that he had already, basically, proven that lamb is safe for him!
Since we’re about to be pressured into a formula trial for him due to dwindling breast milk reserves in the freezer (we only have 2 days worth of safe food left for him), we decided to reintroduce quinoa so we could possibly have two safe foods for him before the formula trial.
So on Monday we also gave him some quinoa. He ate that lamb meat and quinoa like he was a starving man! I was so thrilled to see him eating and enjoying it!
Then that night he slept horribly. He woke up every 1.5-2 hours all night long.
Tuesday morning I fed him the leftovers from dinner and he – again – ate like a starving man. I also made him some quinoa crackers and he begged for crackers all day long!
At lunch, he didn’t want to eat his lamb. He mostly played with it. Same thing at dinner.
But he ate crackers as often as I would give them to him!
He also had a poopy diaper that day that looked like it had a bit of mucous in it. He is still teething, though, so I hoped it was just from that.
That night he refused to sleep at bedtime; he rolled around and acted really uncomfortable. Finally we managed to get him to sleep after a car ride.
Wednesday morning he still refused to eat his lamb (which, by this point, was also a refusal of the sippy cup of lamb broth we give him).
He refused lamb at both lunch and dinner, but ate as many quinoa crackers as he could get and even screamed for them! In fact, at dinner I coated his lamb meat in quinoa flour before heating it up in hopes that the combination of flavors would appeal to him. He actually sucked the flour off the lamb and spit the meat back out!
And throughout the day, he had three poopy diapers, each one worse than the one before.
It started with definite mucous. Then it was MORE, nastier mucous.
The final diaper was FULL of mucous…and visible blood.
BAD WORDS. BAD WORDS. VERY VERY VERY BAD WORDS.
And after that diaper? He refused bedtime and required another car ride to go to sleep.
I’m sitting here having a really hard time figuring out how to write this part of the story. Everything I want to say is laced heavily with sailor-esque profanities. While I’ve been known to let the occasional, fairly innocuous swear word pepper my blog entries on occasion, even *I’m* offended at what is running through my mind. THAT is how totally and completely angry, frustrated, horrified, disgusted, furious, devastated, and trapped I feel at this moment.
My hatred of FPIES is so complete, so profound…it’s downright scary. I think I hate FPIES more than I could hate anything on the planet.
So here’s where FPIES has left us: we’re being forced into a formula trial very soon because right now we only have enough stashed breast milk to last 2 days of me at work. I’m scheduled to work 10 days in August, so we will shortly have to either force him into a formula trial or have me call out sick for the rest of the month (which we cannot afford).
I am terrified of the formula trial; something in my gut says it is going to make him react. How severely, I don’t know, but I’m terrified of having to do this.
Starting September, I have a 5 month leave of absence from work. It’s financial masochism for us to do this right now, but it’s necessary for Zac’s health.
So now we have to:
- Pull both lamb and quinoa
- Let Zac return to baseline
- Trial a formula (that will probably make him react) and hope he makes it through the ten days I have to be at work this month
- Let him return to baseline if he reacts to the formula
- Re-trial quinoa
- Re-trial lamb
This current bloody diaper has put us behind on food trials by at least a month, maybe more.
At this rate, we’ll be lucky if he has one safe food before Christmas.
And how exactly am I supposed to survive with Zac and Jed all day withOUT feeding Zac his quinoa crackers? Whenever he cries for them, Jed insists on feeding him a cracker. I’m going to have TWO kiddos mad at me for denying Zac his crackers!
I hate seeing my little boy in pain. I hate seeing him squirm from diaper changes because they hurt. I hate seeing blood in his diapers.
I’m so overwhelmed with anger and frustration and devastation. I feel like a caged animal. I want to hit someone or something – but what? There is NO outlet for these emotions.
I can’t protect my son and keep him safe, and I can’t beat the crap out of the enemy that attacks my son. FPIES doesn’t have a face. (If it did, it wouldn’t have one for long once I got a hold of it.)
Sorry, y’all. I’ve said it before that with FPIES, sometimes Hope is all you have.
But I’m all “hoped out” right now.
I feel like we’re running out of options, both financially and for Zac’s health. I don’t know what to do.
I’ll probably feel better in a day or two. Until then, though, this is what’s happening in our world, and sorry for the gigantic downer of a post.
Oh, and an interesting tidbit I learned tonight from the other FPIES moms – my friend was right: the proteins in meat broth and meat are identical. But straight meat has MORE proteins, which means an FPIES child might be okay with the broth but not the meat. In the “for what it’s worth”/”for your information” category.