She said they were never really given info about what to do and now it's too late.
Just like Natalie.
Natalie was a 13 year old girl whose dad is a doctor. She was at a family camp she's been to many times before. She grabbed a rice krispie treat thinking it was a 'rice krispie treat'. She bit into it and tasted peanuts and spit it out right away. Her dad gave her benadryl. She seemed fine and returned to the party. 20 minutes later she was not so fine. Her dad gave her one epipen. He gave her two epipens. He had to break glass to get into an office to get to a 3rd epipen that was locked in there. (The dad ended up tearing up his arm and needed surgery because of that.) It was too late. Natalie died. This was her first and last serious allergic reaction.
Because of what happened to Natalie- many doctors changed kids' allergy plans to NOT include benadryl in it but to instead go right for the epipen. You only have a few precious moments to get that epipen into the person to buy time to get to the hospital---- after a certain point there is no turning back and an epipen will not work.
When our OIT doctor gave Coby benadryl when he was having a more severe skin reaction to the skin test than he had hoped for, I was against it. I said, "but Natalie.... how do we know you aren't hiding something that we need to see progressing G-d forbid...." But I gave in because we were going to stay at the doctor's office that had everything the hospital did just in case. He added some steroids as well and Coby was fine.
When Coby had the combo of 104 and strep and antibiotics and dosing and one night he was extremely itchy and broke out in a weird rash all over his stomach and back, we had sent a picture of it to the doctor and again the doctor said, "give him benadryl to keep it from spreading," but I refused. I was no longer in a hospital like setting. I was home and I was scared benadryl would mask anaphylaxis as it did with Natalie and I needed to know if this reaction would spread. Three hours later, when Coby was scratching himself bloody I relented and gave him the benadryl hoping we were basically past the point of anaphylaxis anyway.
Benadryl terrifies me.
Oakley. Once again it happened- similar story. First reaction. The boy ate a bite of cake and thought 'uh oh, may have had nuts'. He felt FINE. He only had one small hive appear. Was given benadryl. Hive went away. He felt FINE. A few minutes later stomach pain, vomiting, chest pain. EMTs came, tried to give epinephrine. Too late. Heart attack. Gone. The parents said they didn't feel prepared. They didn't know when to use their epipen. They had it, but didn't know. They never heard about Natalie. They weren't taught. They didn't know. And now this precious child is gone. There are no second chances. Oakley age 11, gone.
This family is starting the red sneaker campaign to help promote awareness. Oakley loved wearing his red sneakers and they are hoping this campaign will raise awareness and help keep other families from going through what they did. Until there is a cure, in order to save lives, we need awareness. An allergy can come out of nowhere. Someone can have gone through their whole life never having experienced anaphylaxis- until they do, and it's the one that kills them.
PLEASE learn to recognize the symptoms. Always err on the side of caution. EPIPEN first.
And this is why we have to give this OIT thing a shot. This terrifying roller coaster of a ride that someone in my group correctly labeled as a " COMPLETE AND TOTAL MIND F--K" (fill in the blanks). It is harrowing and exhausting feeding your child increasing increments of what nearly killed him and watching and waiting. Not knowing, terrified, but hoping. So many unanswered questions and what ifs but the bigger what if NOTs. It is so scary. G-d willing we will be able to updose Coby this Thursday since his nose and throat seem to be better than last night. Each updose brings on more fears of reactions. Each updose brings him closer to safety. MIND F--K indeed.
OIT may be the closet thing to a cure there will ever be. "Strict avoidance" cannot be "THE CURE". Because that works... until it doesn't. One wrong bite. People who don't want to be bothered, a mismarked label. A cross contaminated door-knob. A single mistake.
We got lucky with our Coby-bear. We didn't know he had his allergy until he had his life threatening reaction. That Thursday night in the den, near the desk I saw it begin to progress- it was as if it was going in slow motion and I was watching a movie screen. One small hive appearing beneath his eye on his upper right cheek. "This can't be happening." Runny nose. I dawdled. Some strange throat noises. I called Yitz who was on his way home from work saying, "I think something may be happening." Teary eyes. We didn't even page the doctor until Yitz was home about 10 minutes later. "This can't be real, right?" When she heard Coby coughing, sneezing- and I guess in a way choking in the background, she said, "CALL 911 NOW!" A few days later she admitted to us that she didn't think he'd make it through the night. How she was not able to sleep that night until she tracked down which hospital he went to and knew he was okay.
We had a good 20 minutes (or maybe it only seemed that long at the time) til that first hive appeared. But I didn't know. I wasn't sure. And since he was never diagnosed we didn't have an epipen in the house (and neither did the ambulance). We are sooooo lucky Coby is okay. We were warned, 'next time it will be mere seconds before his throat closes up.'
We got lucky.
We were lucky it didn't happen a couple of months earlier when we were on an auto train for 17 hours straight.
We were lucky it didn't happen while we were in an airplane over the ocean thousands of miles away from land.
We were lucky that his blood pressure only began plummeting once we reached the hospital.
We were lucky that the wheezing only started in the ambulance and waited until we got to the hospital before it began to really progress.
We were lucky he only asked for two goobers--- what would have happened if he ate a handful like most kids?
We were lucky this hospital knew to keep him there for several hours watching for a biphasic reaction (which occurs 1/3 the time- several hours after initial reaction often worse than the first)--- after all we were clueless and knew nothing about that at the time (and learned that many hospitals don't even know about biphasic reactions and parents have to fight to keep their kid there for those 6 hours.)
We were lucky that his body only began really swelling once we got to the hospital.
We were lucky that single hive held on until we got to the hospital and only then spread over his entire body from the top of his scalp down his legs unlike anything I've ever seen in my life.
We were lucky we got to bring our boy home the very next day with three days of steroids he'd need to take but otherwise a happy and healthy toddler.
We were lucky.
The only difference between Coby and Natalie and Oakley is that we. got. lucky.
Natalie is all of our's daughter.
Oakley is all of our's son.
They are food allergy children just like our own.
No real difference at all.
Other than luck.
It could have been him.
We were no different. We just got lucky.
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