Hope you had a fabulous Labor Day weekend!
I took the day off from blogging because I was working. That’s okay, though! Other than suddenly being required to be at work a little more than I’d like, my family and I are flying high! (At least, for the moment.)
As reported, Zac passed sweet potatos with flying colors, and the first week of the sea salt trial proceeded with no concerning symptoms at all!
He’s sleeping more at night, and eating more foods because they taste so much yummier with a little salt added.
Things for Mr. Zac are going great!
Now for the interesting part. Let’s talk salicylates.
Remember last week when I shared that the Fructose Malabsorption parents advised me to look in to amine or salicylate sensitivity for Jed?
I have not had as much time to research that as I would like, thanks to flying so much, but I have begun the process.
After an initial research “once-over”, I must say that my instinct says at least Jed and I suffer with salicylate sensitivity in our family.
Oh, why do I think *I* suffer from it, too?
Because one day at work last week I ate sweet potato for the first time in over two years. It was delicious! And an hour later I got a mild headache with some brain fog, and severe stomach cramping.
Sweet potatos are high in salicylates.
As for Jed, he has so many of the salicylate sensitivity symptoms it just isn’t even funny!
We’ve had his speech therapist do an informal ADHD evaluation for him before, because he had so many ADHD symptoms (she determined he wasn’t actually ADHD). He has become increasingly defiant, so much so that I wouldn’t be surprised if he could get an Oppositional Defiant Disorder diagnosis. He wakes frequently at night, screaming, and often grinds his teeth overnight. He reports frequent bad dreams. I can’t tell you the times I’ve heard him scream “Don’t do that! It makes me SO ANGRY!”
This is one of the best descriptions of salicylate sensitivity I’ve found. Reading this, I see “Jed” written all over it.
Another interesting tidbit: salicylates are basically a naturally occurring food chemical. When either natural or man-made salicylates are present in perfumes and cleaning products, airborne exposure can cause many of the same symptoms as when salicylates are ingested!
My Mom and I both cannot walk down the housecleaning aisle in a grocery store, or through the perfume department at a department store, without instantly getting a splitting, “make me hate the world” headache that lasts all day.
I haven’t been able to wear my own perfume for the last decade, because it gives me such a bad headache.
On the plane, when people are especially…um…stinky…in the lavatories, fellow Flight Attendants will often spray perfume-y air freshening sprays to mask the scent.
I’d rather smell the poop and farts; those air freshener sprays give me an instant headache and mean I have to go to the other end of the plane for at least 20 minutes until the initial blast fades.
In addition to FPIES, Fructose Malabsorption, Histamine Intolerance and traditional IgE allergies, we now get to add Salicylate Sensitivity to our list of “food-caused illnesses”.
I don’t exactly have a game plan in place for the next step of this process. So far, Zac doesn’t seem too terribly affected by salicylates. It probably wouldn’t be a bad idea, though, to progress with FPIES food trials from here on out of foods that are safe for all things: fructose, histamine, and sals.
It also seems clear that I need to put Jed on a NEW elimination diet…I just don’t know what that diet will entail, yet.
Remember, I’m still in the early research days, yet.
With all this new, inconvenient news to deal with, why am I still titling this post “Flying High”?
Because no matter what life throws at us, Darrel and I are handling it all a lot better since we did such good work on our marriage!
I can’t tell you how big a difference that has made in all aspects of our lives! It really does affect everything if your marriage is rocky. I’m so happy we got our act together when we did…learning about the salicylate sensitivity would have sunk me, emotionally, had we not straightened things out.
As it is, I’m starting to accept the reality that there will never be a “light at the end of the tunnel” for us. There won’t even be an “end of the tunnel”!
In the beginning, we had MSPI and IgE allergies to deal with, both of which can easily be outgrown in children. Then came FPIES, which is also typically outgrown.
Without realizing it, I latched on to the idea of an “end” to this madness happening for us someday. Our approach was to do what was necessary to survive until…
Now, with Fructose Malabsorption in me and the boys, Histamine Intolerance in Zac, and Salicylate Sensitivity in me and Jed (and maybe Zac, too), the truth is clear to see: this will never end.
The way to truly progress for us is to find a way to manage our particular dietary needs with minimal life restrictions.
In other words, now that it seems as though FPIES is starting to fade away, we need to stop being shut-ins so much…even if we’re still going to be severely restricted with our dietary needs.
How am I going to make that happen?
I have no idea.
But it’s where we need to move towards now.
Oh, and here’s a cute little story to share!
The boys have been on a “Clifford the Big Red Dog” kick lately. The other day, they came up to me with bowls from the cabinet, asking for water.
I shrugged and gave them some water.
They put the bowls down, and did then did this:
They pretended to be Puppy Doggies and lapped at bowls of water.
They also licked me. A lot.
That was weird.
But God bless imaginative kiddos, right? They had so much fun pretending to be doggies for a day!
Have you also discovered you have food issues that will never end? What are your best tips for expanding your life while restricting your diet?
Oh, and have your kids ever play-acted like the boys did? Please share the story!