The last post I wrote shared how grateful I feel for our little “not normal” lives.
I was.
I am.
But, you know, the reality is that no one can sustain any feeling on a 24/7 basis. Not even gratitude for the blessings you have.
Last week was an absolute mess, and it seemed like everything was designed to strip me of my gratitude.
It didn’t succeed.
I’m still grateful.
But it’s taking effort.
Last Monday I snuck some salmon in Zac’s quinoa nuggets. He ate them all, and then ate some salmon for dinner.
No reaction. Yay!
He continued to be perfectly fine on Tuesday and Wednesday, except for the cold that just wouldn’t stop. Both my poor little boys had runny noses, sneezing, coughing, nasal congestion…I hated watching them feel so bad.
So Wednesday night I thawed some of Zac’s safe chicken broth and gave it to the boys. Broth is healing, right? Maybe it would help them both!
Jed wouldn’t drink it. Zac only drank about 2 T. of it. Well, I tried.
Thursday morning, Darrel said he was ready to call salmon safe and move on to a beef trial. So I fried up a hamburger patty for Zac and fed it to him.
He’s eaten bites of his brothers neglected-after-dinner hamburger patties before with no symptoms, so we felt confident in this. Confident enough that Darrel wanted to proceed in spite of the cold, and, though I would have waited til the cold was over out of habit, felt confident enough to agree.
Right about an hour after he ate the hamburger patty, he presented me with a soft, stinky, not-so-great diaper…and an allergy ring.
Uh-oh.
Then he was whiny all day. Clingy. Tantrum-y. A total pill.
In the early afternoon, he had another diaper just the same as before, with a WORSE allergy ring.
Then he passed out at 4:30 p.m. That’s not normal.
With going to bed so early, he decided to wake up at 1:00 a.m. Thursday night/Friday morning.
Less than an hour after he woke up, he presented me with one of the most God-awful, nastiest diapers I’ve ever changed.
Coming from an FPIES mom, this has a LOT more meaning than when a normal Mom says such a thing.
A full half of the diaper was solid, thick mucous…and it REEKED.
What. The. H-E-double hockey sticks?!?
After that he ate his weight in bananas and chicken before giving me ANOTHER nasty diaper. It was better, but still very bad.
Then he went to sleep again at 4:45 a.m., only to wake again at 8:00 a.m.
(Y’all…I’m so tired. I’ve been home from work for well over a week now, and I still feel like something the cat dragged in.)
The rest of Friday he acted great! He still sneezed and had a runny nose, but the child ate like a pig all day and played like a perfectly normal little boy.
Except for his diapers, I’d have thought he had bounced back already. But the diapers told a different story. Actually, the poop itself improved throughout the day; it got solid, firm, and no signs of mucous…but his little tushie turned bright red with one of his tell-tale reaction acidic diaper rash burns.
Saturday his appetite went wonky again. He only wanted to eat bananas. Nothing else. I offered him every recipe I’ve ever made for him and he got more agitated with each offer, eventually screaming at me “UHN!! UHN!!” and running to grab a banana.
He did finally eat a good serving of chicken at dinner, but that was the only non-banana food he ate all day.
Since his diapers were looking good, and his heinie was even looking better, I just went with it.
Sunday, his diaper rash was entirely gone at his first diaper change of the day. Yay! Whatever it was, it was over, right?
Nope.
His second poopy diaper of the day had a tiny amount of blood in it, and a return of the diaper rash.
All he wanted to eat yesterday was more bananas, and his sweet potato/banana ice cream. He finally ate some salmon patties at dinner, and a short while later presented us with two poopy diapers in a row.
The first one showed us he had a worse diaper rash. The next one showed a worse diaper rash AND mucous.
Did I mention I’m tired? I’m weary. Exhausted. Too tired to think.
Darrel has a cold, too, and he’s been wandering around the house like a zombie for days.
The kids, of course, have bounced back from their colds and are at full throttle.
And I have no idea what in the world is going on with Zac.
Is it the salmon? Did we call it safe too soon?
Was it the chicken broth setting off something in his tummy? I don’t see how, unless it’s a histamine thing, but that’s a possibility.
Was it the beef?
Did he pick up some stray bit of rice puff or corn chip from Jed’s foods?
Or was it a virus the whole time?
I have no idea. None.
I don’t even have a gut instinct about what it could be.
All I know is that I’m tired. I’m just so stinking tired. Tired of working. Tired of not being able to sleep at night. Tired of watching my son in pain. Tired of him screaming when I wipe his tush.
I’m tired, y’all.
You know the movie “Parenthood” with Steve Martin? Remember the scene where his wife chastises him for wanting parenthood to be a merry-go-round, when he really needs to just enjoy the roller coaster ride?
It’s a great scene. I love that movie. And she’s right.
Being a parent is a roller coaster ride.
That’s good for me, though, because I’ve always LOVED roller coasters.
I just didn’t think I’d be on this big of a roller coaster for this long.
I’m grateful, truly, for everything we have.
But right now I’d really like the ride to stop for just a few days so I could get some sleep and – maybe – have enough brain power to think this through and figure out what’s going on with Zac.
Really, I’ll just sleep strapped in to the cab of the roller coaster. I just need some sleep so I can help my son. Then I can resume enjoying (and being grateful for) our roller coaster ride.
Anyone have any brilliant ideas about what could be causing Zac’s reactions?
Carrie, I’m so sorry to hear you are all sick. I hope you can get some rest real soon. I would guess the FPIES reaction was the beef and maybe because you did the trial during a time when his body is already fighting off a cold. He most likely has mucous going into his gut and then intestines, from his nose, even if it was just from post nasal drip. And, we all know how little kids are with not always blowing out the mucous. Heck, my 15 year old still does this, and his gut is always worse when he’s fighting off allergies, colds, or whatever. I can tell him a million times to blow his nose, and he still doesn’t listen, even though he knows it affects his stomach also. He has a ton of environmental allergies and IBS-D. He also tells me at times he tries to blow his nose, and nothing comes out, it just drips down the back of his throat. All of this, causes inflammation in the body. Whenever a person is sick, stressed out or whatever, a person’s body is under attack, and our natural response is to fight it off. When we are in the fight mode, histamines can be released in the body, gut, tissues and then turn on mast cells which cause more inflammation. Then the cycle continues. You may be able to try the beef again down the road, when he is doing well to see if he tolerates better. This may be why he didn’t react in the past to the small amounts of beef. Some time when you are feeling better Carrie, do some researching on mast cells and histamines and where these are all located in our bodies. You might find some info that will interest you and maybe relates to some of your situations, or not, but definitely worth reading up on more.
Here’s one link on a possible connection: http://thefpiesfoundation.hoop.la/topic/the-updated-linkmore-than-fpies
Thanks, Deb. Yes, he’s lousy about nose blowing. He refuses to do it. I had to go buy a NoseFreida because of it, and he screams bloody murder when I try to get the snot out of his head.
I know better than to start a trial when he’s not at 100%…there’s just so much pressure to get him safe foods that I talked myself in to trying a food I felt confident would be a safe.
You’re the second person to mention MCAD to me recently. It’s been on my radar for a while now, but when I first heard of it none of the common symptoms seemed to fit Zac. Now I’m hearing other symptoms that DO fit him. Sigh. Guess there’s another thing for me to start reading up on. I’m already behind on sals, histamine and fructose! LOL
Zac is on gut rest now until after the New Year. I can’t deal with anything else until then. Hopefully he stays trigger free until then. Hugs! And Merry Christmas!
Hi Carrie, I almost bought a nose frieda for my 8 y/o dd last year when she kept getting sinus infections and she wasn’t blowing her nose. I read really good things about them if you can hold the child down long enough to get the gunk out. We finally got my dd to do some sinus rinses last year after she already had to do an antibiotic and then the sinus infection started coming back and fevers started setting in again. After 2 sinus rinses, we were able to turn it aorund, but it took alot of coaking to get her to do it even at age 8. Hope the rest of the holidays get better and you all start feeling better.
The Nose Freida is awesome! We had one, but lost it somewhere along the way (necessitating buying a new one). One time I used a bulb syringe and got all I could out with it, then tried the Nose Freida and WOW! I couldn’t believe how much gunk was still in Jed’s head at the end!
I wish we could get the boys to do sinus rinses. Darrel tried with Jed one day and it was totally traumatic for him. (Jed, not Darrel) I don’t think Zac would take kindly to doing them, either, though they’re the best things ever when you’re clogged up.
Thanks, Deb!
I really hope your family ALL feels better soon Carrie!
I have no smart ideas about Zac, though I do know that with my own mast cell problems I’m vastly more likely to react to anything if I’m sick. It’s like my “trigger bucket” gets 90% filled by any virus and so the slightest little thing – even things I’d normally tolerate – I’d react to.
I wanted to say about gratitude though, it’s not a scale where gratitude is at one end and frustration is at the other end. They’re separate. I know that I can be grateful for my abilities and my life and ALSO frustrated up to here about my disabilities all at the same time.
This was really brought out to me in 2010 when I improved a whole heap. For about the next year, I felt like every time I said I was frustrated about my limitations I’d get a bunch of people who were trying to be helpful say to me, “But remember how sick you used to be! You should be grateful!” But I am grateful! I’m grateful every single day that I have the ability to walk to the toilet now – commode chairs are icky and adult diapers are worse – but that doesn’t stop me being incredibly frustrated or sad or angry that I can’t do other things I want to do. Frustration and sadness and anger and gratitude can all happen at the same time.
I know you already know this probably, you’re a smart person, but sometimes hearing it again helps 🙂
Thanks, Ricky. That felt like a really good long-distance hug. I needed that. 🙂
Pingback: Christmas Stories - Cradle Rocking Mama