With every price hike Mylan makes, another child will go without an EpiPen. In some cases, these families will end up in the emergency room….if they are lucky. In some cases, like Gio, Emily and others, they may not make it.
Which is why we are sharing this article from Kimberly Earl, a mom of four in West Virginia. The irony is not lost on her that Mylan was once a West Virginia company. But she sincerely hopes that her story will help inspire change. Because as you read on, it isn’t just food allergy costs that she is covering….
And as the headlines around #epigate continue to swirl, parents are sharing stories that they may not have had the courage to share before, all in the hopes of making Mylan realize that a growing number of lives are on the line.
Please bear with me, this may get a tad longer than my usual post. This picture was from a VERY scary day. It started like most of Jax’s other reactions, itching, swelling and off to the ER. We were whisked in by-passing all your normal stops like registration and triage. I set him down on the gurney and watched as others closed in around him. He could hardly see me. Only in between the swiftly moving doctors and nurses. I stood next to his crying grandmother just repeating “It’s ok baby. You’re gonna be fine Jax. They are just getting you some medicine to make it better.” But I didn’t really know that it would, I just prayed it would.
As I said, it started like our other reactions. Only this day, the swelling wouldn’t go away. Multiple doses of medications that typically reduced the swelling within an hour were not working. The swelling stayed, and it stayed, and it stayed. The hacking/gurgling clearing throat sound he kept making (it’s such a weird sound to describe because it’s not like anything else) would send chills up my spine. I would take turns holding him with my mom for the next four hours until the first sign that the swelling was subsiding. The swelling would not leave for 8 full hours, despite the fact he was pumped full of everything they could hit him with in the ER.
I told you this was a very scary day. Very. Scary. Day. But it would not be the scariest reaction yet. About 2 years later, little brother Wyatt would have his first reaction… peanut butter. FIRST reaction ever and it was the most terrified I’d ever been during a reaction. Jax’s reactions had also been anaphylactic…but Jax was always able to talk to me, even through the throat clearing. It gave me some sense that he was ok, at least in that moment, he was ok.
Wyatt, however, quickly began throwing up. Here’s the part where I tell you … I’m human. I make mistakes.
I had no Epipens. In a rush to get to church…I had left them at home, mistake #1. We quickly got him in the car, mistake #2 should have called an ambulance.
As I rushed down the road for the hospital, my husband said from the backseat beside him… “He’s starting to pass out I think.” My heart sank. “Don’t you dare….don’t you DARE pass out!” ran through my head.
I actually uttered the words… “Stay with me Wyatt, stay awake baby…”
Those were words I had only heard in movies during those scenes that make you cry. You don’t “actually” say them in real life…except I did.
I pulled into the ER lot and flung the doors open, reached in and grabbed him from my husband’s arms and ran into the ER yelling “He’s anaphylactic…please help!!” Again like a scene in a movie, it was so surreal. Once more I had to let others take may baby away. No mommy holding him while he got the shot and hugging him as they put a bandaid across it…nope, not at all like that. There was paging of doctors, nurses in and out yelling back and forth for the medications they needed and what size needles, blood pressure stats, someone yelled “I need him on a heart monitor now!!” …and questions about what he ate, how much, has he reacted before, did you know he was allergic? My head was spinning.
By the way…did you catch that question…”Did you know he was allergic?” You realize at this point, I hope, they ask that because people actually come into the ER and the answer is NO. That a FIRST TIME reaction with NO known allergy, can really be this bad. And it happens often.
Several hours, IVs, injections, monitors later…Wyatt was sitting up and talking to us, crying about wanting to go home. “ME too baby…and I never want to leave again….” ran through my head.
I don’t have a picture of Wyatt to share from this day. There wasn’t anything to “see.” There was no rash, no swelling. Not all allergic reactions “look like” one.
But even THAT is not the real point of my story. At this point you’ve probably thought to yourself…”I can’t imagine what it’s like to watch your child go through that…” You might even have teared up a little.
But again, that’s not my point either. What my CHILDREN “thought” is what I want you to think about. What went through those little minds…to this day if Jax thinks he might have come into contact with something he tears up and asks…”Am I going to die??” Because that’s what THEY remember about those days. They remember needles and being surrounded by frantic doctors and nurses. They remember what it FELT like to have their little throats itch and close, or to watch things go black as they passed out. They remember what it is like to EXPERIENCE a reaction…not watch one.
No matter how much I know as an allergy parent… I will never know that: to know how that feels as a child. And that’s what I want people to think about.
Here at West Virginia Children’s Allergy Alliance, we don’t fight for allergy safe schools and communities because we’re just stubborn moms or because we want things “our way.” We don’t do it for recognition. We do it because we don’t want our children, or anyone else’s, to EVER have to experience that. Ever.
As I got to know Kimberly, she shared something else that I think is really important. She wrote, “Thank you Robyn, for being a voice that won’t be quieted. I saw your post about the days you want to walk away. I know how those go. I’ve been there too.
“Along with my 2 allergic children, both with asthma…my oldest child with no allergies is a pediatric cancer survivor who suffers from life-long effects of his brain tumor.
“I’ve had more throw in the towel, give up and tell the world to piss off days than one can count.
“It’s days like those, I lean hard on the idea I’m not the only one who cares. I’m not the only who fights. So it’s it is totally ok to give yourself those moments of peace. Be with your family, your children…be present in your own life.
“Tomorrow, I’ll be the first in line to hand you back your sword.”