I just have to state for the record that one thing that really stinks about FPIES is the complication factor.
The last week we’ve been confused about the carrot trial on Zac. He has definitely had an acidic diaper rash and poo full of mucous, he has screamed in pain when trying to change his diaper, he has been clingy at times and cranky at others, he has refused sleep at times and passed out at other times that are atypical for him, and he has been completely difficult to read.
We’ve ruled out an ear infection, a throat infection, and discovered he is teething horribly.
Just when I start to suspect it IS the carrots, he screams and gets uber-excited to eat the carrots. Just when I start to suspect is ISN’T the carrots, he has a diaper full of carrots that burns his butt and makes him scream in pain.
I just don’t know what to think.
Compounding the issue is the fact that for the last three days Jed seems to be suffering from some kind of stomach bug. He’s had diarrhea; so much so that we have gone completely back to diapers because the trauma for Jed of having diarrhea in the potty was too great to witness, let alone force him to endure.
Yesterday he informed Darrel and me twice that his tummy hurt and we needed to “go see the doctor so the doctor can fix” him. Today, by 10:00 a.m. he’d already so informed me three times.
But yesterday and today he has eaten like a starving piggy, drunk a TON of water, plays, giggles, bounces, and otherwise acts perfectly fine.
I’d be willing to say that my boys are both suffering from a mild stomach bug, if I were a normal mother. I’d push liquids, encourage rest, and keep a close eye on them both. End of story.
FPIES confuses things, though.
Jed, clearly, is suffering from some kind of stomach bug. But is Zac? I don’t know!
The only thing to do is to keep moving forward. We’re going to pull the carrots for a few days (again – it’ll take forever to finish this food trial at the rate we’re going!) to see if his symptoms clear up and if so, we’ll begin the trial again.
I wish we didn’t have to spend so much time playing “If…Then…”, but FPIES makes us play that guessing game over everything we encounter as parents.
So if you’ll excuse me, I have a toddler that wants to cuddle and a baby that seems to NEED ME and I’m going to go be Mommy to my sick(?) boys today.
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Does FPIES confuse your symptoms? What do you use to determine regular sick versus FPIES reaction?
Hey girl there is a terribly bad stomach bug going around that basically the nurses say if you have left your home you have been exposed too. I’d bet on that. it is awful!!!_
Ugh. Thanks! I’d heard there was a stomach bug but I didn’t realize how pervasive it was. :-/
I does strike me as ironic that the best FPIES mamas are probably the most analytical… and therefore the most frustrated by the multiple causal relationships involved in FPIES and toddlers! Hang in there!
There’s an element of truth to this observation, sadly. :-/
Hang in there Carrie, it’s not just FPIES that’s like that, I think any complex disease is similar. With three separate-but-linked rare diseases going on in my body I’m a completely confusing mess of symptoms too, trust me :/
I tried once to make a diagram indicating the links between my different diseases and symptoms – it’s at the bottom of this page if you’d like a look, the arrows indicate that something causes something else: https://www.evernote.com/shard/s56/sh/da52fc66-3bfd-4792-8672-63bf5064d4a9/27c7a8be561091ae148264e35bc9c4fd
No wonder it’s complicated to sort out!!!
I hope you and your family can enjoy Christmas together 🙂 Blessings from Aussieland.
Ricky, OMG, hon! I got a headache just trying to decipher that diagram! Wow…I knew you had health concerns, but that’s more extreme than I realized. Wish I could give you a big hug right now for being so strong and awesome to handle all of that!!
EDS…I just saw a friend of mine was diagnosed with that. It’s pretty rare, right? Have you met anyone else who has it?
Merry Christmas to you, too, Ricky! Big hugs!!!
EDS is weird like that – statistics say it’s very rare but I seem to know an absolute ton of people with it…. it’s hard to tell if it’s actually less rare than the textbooks say or if I’ve just collected a bunch of rare friends because diseases work like that, you accrete friends with similar diseases from online support groups and I have been around “here” (online) for 20+ years now… personally I suspect it’s a lot less rare than the textbooks say though, especially in the milder forms.
I am pretty much bedridden – I can sit up for about 5 hours per week at this point, the rest I am either lying in my waterbed in my bedroom or lying on the hospital bed in my living room which is where this computer is. In the 5 hours per week sitting up time I can sit in my recliner chair or reclining wheelchair so sometimes I can go out but mostly only to medical things because 5 hours isn’t much sitting up and it gets used up quickly. The computer’s all set up so I can use it lying flat, which helps a lot with not going nuts with boredom!! Also thank heavens for smart phones, so I can listen to audiobooks and podcasts when I’m in my proper waterbed.
The weird thing is that when I describe it like that it sounds bleak even to me, but it’s NOT bleak mostly when I am just living it. My life isn’t very normal by any measure, but it’s definitely worth living and being in and I get to do tons of awesome things both online and offline and I am content and generally happy. I wish there was a good way to communicate that to people, because I am afraid that folks will read about the bleakness and get the wrong idea. I have friends and family and creative things that I do and pets and I do advocacy stuff and blogging and programming and I learn things – it makes me happy, mostly, and that’s all anybody can ask for.
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