Monday, February 13, 2012

Critique of a Food Allergy Reaction Response

Looking back over the reactions my son has had, there is one we still refer to as The Incident. It was not the most dangerous reaction, but it was traumatic for all of us and became the turning point in how we prepared for them and treated them. (There's both good and bad in that...but that's a post for another day.)

When my son was about 5 or 6, he asked for "milk" and cereal for breakfast. My husband gave him MILK and cereal. At the time it happened, my husband was ill and not thinking clearly. We also have a daughter with no known food allergies, so at that point there was always cow's milk in the fridge.

The next thing I know, I'm in the bathroom, holding my son's head as he's vomiting everywhere. I can see the panic in his eyes and the swelling starting on his tongue. I rushed upstairs, stood over the bed where my sick husband lie and said "WHAT DID YOU DO???!!!"

"Oh my God," he immediately said. "I gave him MILK. Real MILK!"

I rushed back to my son, who was on the bathroom floor now with his back against the wall. It was obvious this reaction was not going to go away with Benedryl. It didn't matter at that point anyway; he was vomiting much too much to keep any antihistamine down. I did try the Benedryl anyway; he immediately vomited it. Now I didn't know what to do next - if he kept some of it down, I didn't want to double dose him. But what if he hadn't?

"I think we should use the Epi-Pen," I whispered to my husband.

"No, no, NO," howled my son from the floor. He had obviously overheard and was terrified of the shot.

"But honey, it will make you feel better," I told him cheerfully. "NO! NO!" was the response. My husband was unsure as to whether this reaction warranted it, but he went and got the pen from the kitchen. "Do you really think he needs this?" he said to me, again in a too-audible whisper.

"I DON'T NEED IT - DON'T GIVE ME A SHOT" came back to us from the floor.

"You're going to have to hold him down," I said. However, my son had been forewarned about what was going to occur and he was a writhing, squirming mass of 40-lb boy. It took quite a bit of pressure to ensure his leg was still enough. At that point, I froze. Was I doing the right thing? He was so tiny...would the needle hit bone? What if I... "JUST DO IT," I heard my husband growl. "IT'S REALLY HARD TO HOLD HIM LIKE THIS." With that, I took off the cap (old model) and jabbed it. The force of the needle startled me and I almost jerked it back in surprise, but luckily I kept it in.

"No, NO, NO," my son was still sobbing. "Honey, we're all done," I said. He didn't even know I had given the shot.

"It didn't even hurt," he said in wonderment, his tears suspended.

Even with the shot, the vomiting continued and it got to the point where he was coughing and choking on the mucus coming up. Plus, we had given an Epi-Pen, so it was off to the ER. We live very close to a hospital so we jumped in the car and went.

As soon as we got there, the nurse saw what was going on and handed us a bucket. We sat in the chairs for a few minutes while they checked in other patients. Finally, seeing that this was going to take a bit, I walked over to the desk and said "he's having a food allergy reaction." Immediately, things changed. (She had assumed when we came in that he had flu, as it was flu season.) We were ushered into an exam room and we had a doctor with us immediately.

They looked down his throat for swelling, asked general questions about what had happened, the allergen, how certain we were about exposure, and what past reactions had been like. They slid his finger into a pulse oximeter to measure his oxygen level but the machine wasn't working, so the doctor just listened to his chest and counted his breathing. The doctor explained that the vomiting would probably be best helped by an antihistamine and that he really didn't need another epinephrine shot. However, he was vomiting too profusely still to keep it down, so they'd have to put an IV in.

20 minutes later, we were still waiting for the IV. The ER was so slammed that we were on a gurney in the hallway. The ER had no pediatric IV sets, so they had to call down to central supply to see if they did. In the meantime, the nurse had tried twice with the smallest adult set; neither worked. My son was back to screaming. The Epi-Pen was nothing compared to the botched IV.

Finally, a peds set arrived and they got him set up. The nurse hung an IV drip and said "I'll be back to check on you in 20 minutes." I did my best to comfort my son, who was still pretty shaken up and not happy about the pain in his hand from the IV needle.

We sat. We SAT. Another nurse came by and switched out the empty antihistamine drip for a saline drip. Another hour went by. The first nurse came back, saw the saline, and started to hang another antihistamine bag. "You already gave him one of those," I asked. "We also gave him antihistamine at home. Is he really supposed to get another?"

"Oh, you're right," the nurse said. "We're just so busy here today, I was thinking he hadn't had this yet." Yikes.

Eventually, they let us go home, with instructions to continue to dose with Benedryl every 6 hours.

My son said very little about the incident. Of course, he was pretty drugged up from all the Benedryl and slept round the clock. I hovered over his bed, counting the breaths and occasionally grabbing his wrist to make sure his heartbeat was strong. My husband had to stop me from actually shaking him awake a couple of times just to make sure he was o.k. Paranoia is a tough companion.

Over the weeks, I noticed something. My son loved his blocks and toys and would set up whole worlds of imagination. One day, I passed by and heard him say "and then the man went to the HOSPITAL and got a big SHOT. It hurt a LOT but he was O.K."

Wow. It had been almost a month at this point and he was still thinking about it. I realized that not talking about it to help him forget wasn't working so well. "Are you remembering when you went to the hospital?" I asked him. No response. I realized he wasn't going to be able to talk about this, so I just laid down on the floor and picked up a toy.

"I'm going to give you a SHOT!" I said, moving toward his toy.

"No, no NO," he said and moved his toy away while giggling.

We spent a great play session re-enacting all the things that had happened, but using the toys to distance us from the actual event. And, of course, everything worked out. I emphasized several times that the shot "probably didn't hurt that much, even though Play Guy here is dreading it."

"That's true," he said solemnly.

Eventually, things returned to normal. We did have to give an Epi-Pen a couple of years later. He was a tad apprehensive, but older, with the memory of one under his belt already, and there was no struggle. By the third time we did it, he was ASKING for it with no fear. Now he knows the pen hurts very little, less even than a vaccination, and the relief from many of the symptoms takes less than a minute. He thinks it's funny that he ever dreaded the shot itself, although he still dreads the observation time in the hospital.

So...for those of you who have not been through this, let me dissect what we did wrong in the hopes that you will do better, should you ever need to:

  • We didn't label the milk. We assumed that milk was milk and that it didn't need a "NOT FOR BOO" sticker. It did. That doesn't mean accidents can't still happen but we made this one too easy.
  • Sick parent = no child care. My husband shouldn't have tried to be a hero. 
  • We dithered over whether/why it was a reaction. This is a tough one. When your kid starts vomiting, especially if they're little, it can be difficult to tell whether they're really having a reaction, especially if they don't get hives (which is common as they get older). There comes a point, though, where you have to look at the symptoms and make a guess, even if you don't have all the answers. We have had a couple of food-allergy reactions that we never traced to any allergen we could find. Plus, I left him alone while I ran upstairs - not ideal.

  • We argued in front of our child about how to treat it. The reaction and the after effects were a lot more traumatic because our son sensed we didn't know what we were going to do. If we had quietly agreed to give the pen and distracted him while we did it, things would have gone so much smoother. If you have fears about giving a shot in general, work them out before you get to the crisis point. Practice with an expired pen on an orange so you know what the release mechanism is like - the trainer and the actual pen are completely different. (Don't forget - count to 10 before you release the pen.)

    You're going to panic. That's why you need that food allergy action plan that you develop with your doctor. At the point we saw swelling in his tongue and vomiting, we should have gotten out our sheet, saw that two body systems were involved and not had that argument about whether to give the pen.
  • We probably shouldn't have driven to the hospital. Really - if we couldn't give an Epi without arguing and shaking, how safe was it for us to drive a car? Just call 911 already. 
  • When we got to the ER, we didn't aggressively tell them it was a food allergy. Don't sit politely in the chairs and wait your turn. 
  • We didn't check out the hospital in advance. We did not consider that the closest hospital to us was not certified for pediatrics. (That has since changed -- I did report the experience to the ER director afterward, so perhaps it made a difference.) 
  • We didn't pack a bag in advance. The doctors will want to keep you at the hospital long after your child feels fine and wants to go home. Entertaining a first-grader while sitting on a gurney in the hallway for 4-6 hours is not an easy task! Make sure you have a book with you. Even drinks and a snack are appropriate if there's time, because once epinephrine and antihistamine are given, your child will probably feel a LOT better, maybe even completely better. 
Now here are a couple of things we did right:
  • We spoke up when something didn't seem right. It was horrifying to me that the hospital could be so busy that my son could be double-dosed with a medicine, but mistakes happen all the time. 
  • We realize our child needed to process the experience in an age-appropriate way. That almost always will mean something other than talking to you about it. Play works great for little ones; toddlers may regress and need a lot of TLC; older children may need to talk it out with their friends and emphasize the "coolness" of their hospital bracelet or IV bandage. Just be sensitive and give your child every opportunity.
  • We emphasized the positives afterward. My husband and I made up a little routine after this incident. "Remember how scared you were about how much that shot would hurt, and how you didn't even notice when we gave it to you?" we would say. The positive reinforcement helped him a great deal the next time the needle came out. We also emphasized that, while it was scary, we knew how to treat him and the doctors knew how to treat him, so everything was o.k.
Most of all...give yourself time to breath afterward.

When I started this blog, I thought about calling it "Food Allergy Veteran." But...I realized something that I know in spades after every reaction: no one is ever a veteran of this stuff. All it takes is a reaction to completely shatter your equilibrium and return you to questioning every one of your preparations and responses. We've gone a couple years at this point without a major reactions. I hope I won't have to write about the next one...but I probably will. That's the nature of the beast. 

1 comment:

  1. Great tips! Thanks so much sharing. It's not always easy to know what to do in these situations. You did a good job and your son was safe.
    The vomiting is a hard one. A few years ago my son started projectile vomiting. I thought it was the flu until I notice WHAT he was vomiting. His dad and I talked about SOME Doritos being safe for his allergies. Dad heard "Doritos are safe". Most actually are but not the original kind (they have wheat). He brought our son home a small bag of original Doritos to try and I didn't know that he ate them. The reaction was almost over before I realized that it was a reaction. Scary Stuff!!

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