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. Continue reading →

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Three weeks have passed since my last post.  Many of you have reached out offering words of support or help.  This means so much to us, you cannot imagine.  The last month has been exhausting, both physically and emotionally.  Having our family’s and friends’ support is critical so thank you, thank you, thank you.

I don’t even know where to begin to catch up…this post could be pages.  We were still waiting for a plethora of test results to come in (which is why I hadn’t posted yet) but most of them came in yesterday, and I was finally able to connect with our allergist to discuss.  Plus, we had another severe reaction this week which landed Dean in the ER so need to just write, let go, and release.  Here’s my attempt at the shortest, but complete, recap of life the last 3 weeks:

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I’ve had several moments of weakness this week.  Just when we seemed to be getting the hang of things, just like that, a few unexpected curve balls were thrown at us, and I’m back on the emotional roller coaster.

Dean had a fever last Friday through Saturday evening.  We were administering ibuprofen every 6 hours.  Saturday morning, we took him in because we suspected an continuing ear infection.  This was confirmed, and he was put on augmentin.  Somewhere in the middle of all this, he had a horrible allergic reaction on Sunday afternoon.  He woke up from a nap and while I was changing his diaper, I noticed several very large hives forming on his legs.  Within ten minutes, they started spreading to his back and torso, and his leg started swelling.  I ran downstairs, and Matt got the epi-pen ready.  We were confused on what to do.  Fortunately, a dose of Benadryl ended up clearing it within 10 minutes.  The reaction was really unexplainable.  He didn’t have anything unusual at lunch, although he did have a large serving of soy and a new bread with sunflower oil.  I wondered if soy was it since he is allergic to pretty much every other legume but soy (thus far).  I also wondered about the antibiotics and the oil.

Around 11:30 PM, I went to check on him before going to bed, and his fever was raging after being fever-free for almost 24 hours.  I gave him ibuprofen again, and as I was giving it to him, a thought occurred to me.  Is he allergic to ibuprofen?  At this point, I should also stop and frame up the scene.  For the past two days, the poor kid has been pumped full of ibuprofen every 6 hours, antibiotics twice a day, and now Benadryl to boot.  When he even sees the medicine dropper coming, he literally starts wailing.  He’s so upset, he can’t catch his breath and starts coughing.  Twice this last week, he was gagging so hard from crying, he threw up.  He flails so hard and violently, I almost dropped him twice.  This situation is both heart-wrenching and extremely nerve-wracking when you’re trying to quickly administer Benadryl to prevent an allergic reaction from getting worse.  Anyway, after giving him ibuprofen, I laid him back down to bed.  I couldn’t sleep because I was worried about him being allergic to the ibuprofen.  I watched him in the monitor and even though he wasn’t making any noise, his body movements were odd.  After fifteen minutes of this, I couldn’t take it anymore.  I checked on him.  His face looked fine but I unzipped his sleeper sack and pajamas, and his hives were coming back.  I flew into our bedroom into a panic and awoke Matt, “It’s starting again.  His hives.”

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The end of the year is here and so is busy time, with work, holiday shopping, parties, and trying to take some personal time to unwind, relax, and reflect on the year.  With that, I’m about three weeks behind on “present state.”

To catch you up, we had to take Dean into the allergist for his flu shot this year.  I didn’t even know if he could have one.  Last year, he had one before we knew about his egg allergy and that shot has now likely been his only egg exposure (you typically don’t experience an allergic response your first exposure).  His allergist said he could have one, and recommended it, since the amount of egg protein is so small but that she had to administer it in her office vs. a pediatrician’s and indicated we had to wait the full 30 minutes afterward to ensure no reaction.  Thankfully, he received it with no issue…well, minus that shot part!

Since we were in anyway, we had him tested for the items that were currently on our watch list.  She performed a prick test followed by a blood test to check the suspected allergens.  We’re getting into more uncommon ones now so two of them (avocado and black beans) had to be sent to the Mayo Clinic for testing.  Who knew?!  At the same time, contrary to my knowledge, I asked her about other gluten options.  Seeing as we know he’s anaphylactic to wheat, I inaccurately had assumed this whole time that he had to avoid all gluten (barley and rye) but she explained that food allergies don’t work the same way intolerances or sensitivities do, like celiac disease.  Someone can be allergic to wheat but be totally fine with barley and rye.  I was excited to learn this and of course, had her test him for barley and rye then.  Anything to open up our diet options would be fantastic news!

Unfortunately, Dean failed every one.   Continue reading →