Allergies, FPIES & Stepping Back
I get allergies. Yes, I'm tooting my own horn. I get them. When you live something every day, you MUST understand them!
It hasn't always been this way. Pre being diagnosed with celiac disease, I knew NOTHING. When you hear me say that I asked the doctor, "So instead of four bowls of cereal every day, just one?" It is NOT fabrication, I truly said that & believed that.
Ha. What a wake up call to this gluten-free life!
A decade plus of being diagnosed, I get allergies. And I WANT others to.
People have described me as, "Intense." "Passionate." "Direct."
It's a double edged sword. But it benefitted me when I was diagnosed. I dived in, DEEPLY, to every article, fabrication, alternative culinary school, books, recipes, that I could find to understand what I was to do in living a permanent gluten-free lifestyle.
Not glucose free. Not glutton free. GLUTEN. If you are reading and saying, "what is gluten?" Check out my books here. Yes, shameless plug. I write and sell books related to celiac disease and the gluten-free lifestyle. But that's not the point for this blog post, you see, I have become a shadow on the social media pages, marketing and promoting my little business. I have relied on word of mouth sales and am beyond thankful for those who have visited and still bought books.
You see, our little family was thrown a curve ball in October 2019. My second born was diagnosed with a rare disease, called FPIES. HUH?
Yes, his doctor said,
"like apple pie, but FPIES."
He reacted to consuming a food and landed us in the hospital due to vomit to decompensated shock within minutes. BUT not minutes from ingestion...Two hours after the ingestion. With FPIE kiddos, it takes (debatably) 2-4 hours after consumption for them to have an 'episode'. In most cases, it's terrifying, and yes...I was on high gear. But...
I am unashamedly a believer in Jesus Christ. When scripture states, "He gives peace, beyond understanding." (Phil. 4:7) Yes and Amen!! Jesus had been oddly preparing me for quite some time for the day my baby reacted. When I'd pray for my babies, I kept feeling pressed to pray for an underlying food issue. I even randomly told my husband, "I think he is anaphylactic." There was NO REASON to believe that, or think that. We called my kiddo "a tank." He could eat everything, and anything, unlike our allergy first born. But now here we were, watching my baby go from vomit, to lifeless gray colored skin to being admitted in the hospital after consuming oats.
OATS. He had consumed them for 15 days prior, and now he episodes, what gives?!
And that my friends is another story, for another day. BUT I will tell you, if you get allergies, it is the COMPLETE OPPOSITE. It is a totally rewiring of understanding to go from allergies to FPIES. If you have a child with FPIES, you get it...or just hope to wing it. When someone has FPIES, they react after a build up of consumption vs. an immediate reaction like IGE allergies. It's non-IGE related. What does that mean? That means, there is no test, no way to find out what they are FPIES to, just through trial and error consumption. Any food, spice or additive could be a culprit. A child could pass a food for 6, 8, 10, 15 days, and then BAM FPIES reaction. Confused? Me too. Just know, it's confusing, but I have been so thankful for our FPIE community and Children's Hospital.
FPIES is a whole new ball game.
For the sake of survival, I needed to step back. It was a must....I will do whatever I can for my babies. And man, did we walk a crazy road. Has my baby received the passage of healing? Nope. not, yet. But we have come out of the clearing and breathing easier.
Praise Jesus. It's all because of Jesus. If you don't know, HIM.... ask me about Him.
In the meantime, I'm going to get back SLOWLY to the marketing game of my books. SO to kick this off, I'm offering a buy one, get one free promotion. That's TWO BOOKS, for the price of one. Use code: 2FOR1
Buy one, get one, or leave one on a friend's doorstep. If I was better at sewing, I'd offer a face mask, but I can't. I can direct you to amazing companies, doing incredible things during this pandemic. BUT what I can give you is at home reading by sending you an extra book, when you buy one.
So whether you have a kiddo with FPIES, allergies, Crohns, or any other food related disease, HANG in THERE. It gets better. Don't give up. Advocate and fight for your child. And LEAN on Jesus. He cares more about your baby, than you ever will. He will sustain, He will strengthen and He will carry you through the storm.
Until next time...and don't judge me if it's month from now! - Tara
----2FOR1 Promo. Your free book will be selected at random by TMGF Productions, unless specified.