After a couple of hectic back-to-back activity-filled weekends, I told Matt that I wanted to do nothing this weekend.  We had family dinner plans with our neighbors on Friday night, gymnastics and ice skating for Kate on Saturday morning – otherwise nothing.  So my intention was to write a post (it’s been awhile) about something positive for once.  All the negativity and stress of December and January, in addition to the bitter cold weather, was beginning to feel old.  Now that the weather feels like spring, I think we’re all feeling more upbeat and revived.  Unfortunately, we had a setback Friday so I’ll start with the briefer version of the “good” and then have it out with the “bad.”

The Good

After having to eliminate more food earlier this year, Dean seems to be generally doing much better.  His allergic reactions have calmed down to a more “normal” state so we decided to reintroduce soy in February.  While we haven’t tried larger doses of it, like edamame, soy milk, etc., he seems to be doing fine with soy as an ingredient in other items like waffles, rice cakes, etc. so we’ll keep with it routinely to ensure he doesn’t develop a more significant allergy.  In addition, Matt tried shrimp last week, and he had no signs of a reaction which is great news in terms of keeping more protein options.  We have not re-tried green or lima beans.  At this point, I’m assuming he’s likely allergic since he was starting to show signs of reactions even prior to the crazy unexplainable December and January months and given all his other legume allergies.  We still need to go in for a challenge of ibuprofen and oats but were waiting for his body to get back on track and then find the time to bring him in.  He has to take or eat small doses over 15-minute increments and then wait for 3 hours after that in the allergist’s office so we’ll likely have to take vacation time for both of those on separate visits.  It’s bubbling up on the priority list but after Friday, we’ll likely wait until April.

The Bad

We went out for pizza on Friday night.  I packed up Dean’s allergen-friendly pizza and some blueberries and headed out to meet everyone for dinner.  While we were getting Kate and Dean’s food ready to eat, without us knowing, Dean sneakily grabbed a bite (we think) of regular pizza off Matt’s plate.  We weren’t sure exactly how serious of a situation this was – he had marinara sauce on his face and his fork in hand.  Did he just touch the sauce or did he actually eat a bite, two bites?  Plus, what does that actually mean?  Will one bite put this kid into anaphylaxis?  We know that his emergency plan has now been updated to give him an epi-pen immediately after known wheat consumption even without any symptoms or if wheat consumption was likely given and there’s any signs of reaction, even mild, because we know what will happen next.  But up until now, when he’s had an anaphylactic reaction, he’s had lots of wheat – an entire bowl of soup that had wheat in it, a bowl of pasta, etc.  Would one bite put him over the edge?  We were watching and waiting.  He had 3 slices of his pizza, the entire bowl of blueberries, and milk and seemed fine.  I thought we were out of the clear.

As we were winding down an hour later, Dean started scratching his wrists, a common thing he does when he’s starting to have a reaction.  Then he started scratching the back of his neck and his armpits (which he’s never done).  I told Matt we needed to wrap up.  I went outside to give him Benadryl.  He was itching his armpits more; I looked and saw a few small hives starting to break out.  When I looked at his stomach and back, they looked OK.  Matt said we should get going and get him home.  We had separate cars so I went to put Dean in mine and got him in the carseat.  On second thought, I got him out and decided to take off his shirt, then strap him in, so I could see his skin while we were driving.  About 2 minutes had passed at this point.  I took off his shirt, and he now had raised quarter-inch hives all over his stomach and back.  I got that feeling in the pit of my stomach when you know something bad’s about to happen.  I grabbed Dean and ran to Matt’s car and knocked on the window.  “This isn’t looking good.  He’s starting to break out everywhere.”  Matt said, “We need to epi him.”  Matt got it out of his bag, we went to the back of the car, and Matt laid Dean down to position him.  His lips were now swelling.  Matt gave him the epi; he wanted to do it since he hasn’t yet.  Poor Dean cried, of course, but recovered quickly.  I threw him in the car, and we headed straight for the hospital which was about 5-10 minutes away.  It was the longest 7 minute ride ever.  Of course, everyone is driving so slow and you can’t pass anyone.  I started freaking out when Dean went from itching and crying to just sitting there and looking oddly around and out the window and closing his eyes.  He’s never acted like that before as the adrenaline usually jolts him wide awake.  I kept looking in the rear view mirror, turning around to see him, and thought to myself, “Oh my god.  He’s going to lose consciousness.”  “Dean, Dean honey, stay with me.  Stay awake honey.  You’re freaking me out.”  I kept shaking his knee/leg while I was driving.  At this point, I thought about calling 911 and was starting to panic.  It’s a long story but I didn’t even have my phone with me.  I had gotten out at a red light to run back to get Matt’s but then couldn’t get into it because it didn’t recognize my face nor did I have the password.  Of all the times not to have my phone!  I had visions of all those stories I had read when a mom or dad drove his or her kid to the hospital instead of calling 911 and not making it in time.  But at this point, we would be at the hospital quicker than they could get to us anyway, and I kept reassuring myself that most of those stories involved no use of an epi.

We got to the emergency room.  No parking.  Are you kidding me?  I parked it right in front of the “No parking sign” and ran around to get Dean out. A security guard walked up and said, ‘You can’t park here.”  I said, ” This is an emergency room.  How is there no parking here?”  He’s like, “You have to park it up there” and pointed to a lot way over around another building.  I said, “I’m not parking there.  My husband can move it.”   I’m thinking dude, you can ticket or tow me if you want.  I am not driving it over there.  So he asked me just to back it up 2 feet so I wasn’t blocking the ambulance bay.  Fine, done.  I ran in and despite what Matt said was a busy emergency room with every single seat taken (I didn’t even notice), they brought us in right away.  Thankfully, his breathing was OK, and he was now wide awake and crying, probably thinking, “Oh no!  I’m back at the hospital again?”  I know he hates that place.  I hear ya kid.

They say every reaction gets worse.  I guess what they say is true.  I still can’t believe he got that bad over one, maybe two, bites of pizza.  I think once the gluten really started digesting and hitting his system, his face and body started showing more typical signs of the reaction, mainly this bright red color over his whole body, particularly his face, and he feels like he’s got a fever.  After about an hour there, I left briefly to go home to get Dean’s pj’s, sleeper sack, blanket, and some books.  When I came back, he looked awful.  He had these bloodshot bruise-looking marks around his eyes, his face was bright red, he had widespread hives everywhere like a rash, in particular on his legs, and he was itching all over again.  I had come back to get Kate, take her home to bed, but now I was worried about leaving.  Matt said the nurse had stopped by but the place was so busy, no one was even paying attention.  We were on a bed out in the middle of the hallway because they needed the room for other patients.  I was nervous Matt was not going to grab someone if Dean kept getting worse but reluctantly left with Kate.  About 30 minutes later, Matt texted and said they were giving him another epi dose and more antihistamines.  Ugh!  Geez.  I knew it.  We’ve never had to give two epi doses.  OK, now I was officially worried.  They were also giving him prednilosone which was good.  I wondered why that hadn’t done that earlier.  Anyway, a friend offered to come over and watch Kate and I finally agreed.  I couldn’t sit at home wondering what was going on so I went back to the hospital.  When I arrived, Dean was finally sleeping.  It was around 11 PM at this point.  We had been there since 7:40.  He was in and out of sleep and crying for the next 2 hours until we were finally discharged around 12:45 AM.  Throughout the evening, he kept pointing to the door and saying, “Home?  Home?”  That’s exactly where we’re going honey.  Home sweet home.  His hives, redness, and rash were still present but overall, he was looking much better.  By morning, it was all gone.

I remember asking our allergist if we really had to give Dean an epi-pen if he has just one bite of wheat after Dean’s last major reaction in January.  At the time, it still seemed like overkill.  Guess we now know what one bite can do.  Next time, I don’t think we’ll think twice about it.