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.”

Matt tried to convince him to take the Benadryl while he sobbed, and I starting crying myself.  All I kept thinking was, ‘Are you kidding me?  This kid is now allergic to medicines?  We can’t catch a break.  So the thing that’s supposed to make your kid feel better just makes our kid’s body shut down?  How can this even be happening?’  We were up until 2 AM monitoring and finally put him to bed.  I had a difficult time sleeping that night.  Thankfully, I was home with him on Monday since I already had a vacation day.

I talked to the allergist, and she thought it was the ibuprofen and told us to switch to Tylenol if needed.  Monday night was awful.  Dean was up crying until 2 AM again.  Whatever was going on with him was taking its toll.  He was screaming in some sort of pain.  If I even moved his arm, he screamed and cried.  I started to wonder if he had spinal meningitis or something of the nature.

On Tuesday, he woke up with a whole new rash all over his body, mainly his face and torso.  By now, he hadn’t had ibuprofen for over 24 hours.  I honestly wasn’t convinced it also wasn’t the antibiotics and choose not to give it to him Tuesday morning.  By Tuesday evening, when I picked him up from daycare, his rash had gotten worse.  It was all over his back as well and had gotten more pronounced.  We gave him Benadryl when we got home to see if it cleared.  It didn’t so now we suspected something viral (roseola?) on top of everything else.  Matt stayed home with Dean Wednesday and got him into our pediatrician in the morning.  I was on the phone with the allergist, and both her and our pediatrician were in contact with each other to troubleshoot what was going on.  Ultimately, they think it was either the ibuprofen or the soy; they don’t suspect the antibiotics and think he also had roseola on top of the ear infection and fever.  Sweet.  Our allergist told us to come in for challenges of both.  Since his ears looked clear, our pediatrician recommended we stop the antibiotics as a precautionary measure.  I worried about bacteria resistance if he wasn’t in fact allergic to the antibiotics but she said that the philosophy on this has changed and that 3, 5, and 7-day doses have been shown to be effective courses of treatment without producing resistance.  Who knew?

Things slowly got better over the next few days, and Dean seemed to be back to his usual self by Saturday.

Yesterday, something happened again.  Kate, Dean, and I made holiday cookies that were Dean-friendly.  I watched as he ate some of the no-bake “batter” and could see his skin started to turn red from where the food just touched his cheeks.  We sat him down for dinner around 20 minutes later and saw his face starting to break into hives and his lips swelling.  I panicked and ran to check his emergency plan: use epi-pen immediately for significant swelling of the lips.  What the hell is “significant?”  We kept checking his tongue to make sure it wasn’t also swelling and not knowing whether to epi or give Benadryl, Matt made the call to give the latter.  We watched and waited, and I cried again for about the 5th time this week.  Within 15 minutes, the hives and swelling seemed to clear.  What in the world did it this time…coconut, soy lecithin, vanilla, cross-contamination?  I checked him before I went to bed around 11 PM but couldn’t sleep.  I set my alarm for 1:30 AM to go in and check on him and ensure he wasn’t having another reaction once the Benadryl wore off.  Thankfully, he looked OK.  How can we have almost two epi-pen instances in one week?  I can’t keep living on edge like this.

And so we get to today.  Our allergist wants us to come in to completely re-evaluate things with Dean and determine where to go from here.

I feel defeated. And exhausted.  And helpless, worried, fearful, alone.  It’s like we’re back to square one.  I don’t feel comfortable feeding him anything anymore.  In talking with our allergist earlier in the week, she’s really hoping it’s not the soy.  As she said, “You’re so limited with his diet as it is.  Dean’s just extremely sensitive to so many things.”  I asked her to put this in perspective for me, “When you say, ‘Dean’s extremely sensitive’, what does that mean?  Is he in the top 25% of patients you see in level of severity?  10%?”  She responded, “No, like the 1%.”  I instantly burst into tears.  The tears were partially for validation from someone who understands what we’re going through and some sense of defeat for what we’re up against.  “Can we do anything else?  Could there be any other underlining reasons why his body is just reacting to so many things?  Is there anything we can do to help prevent it?  To help him?”  “I’m sorry, I just don’t know of anything.  You could try to go to Children’s but I follow all the research, and I just don’t know of anything else right now.  I swear it’ll get better.”  In talking with a co-worker today (whose wife is a pediatrician), he asked if we ever would get a second opinion.  “My wife knows this great allergist.  She takes all the really difficult, complicated cases.”  I replied, “I do really like our allergist but I’m open to taking the name to see.”  Of course, he brings up her name.  So we’re working with the best of the best which was reassuring to hear because I love her.  But I kept thinking back to her comment “Dean’s in the 1%.”  So now he’s also in the 1% of the allergist who’s seeing the worst of the worst.  How demoralizing.

In the meantime, I worry.  Every morning I wake up, and he’s not up before me, I fear that my worst nightmare has come true.  I have images of me walking into Dean’s room and he’s lying there, face blue, body cold, limp, and not breathing.  He’s died in the middle of the night having an allergic reaction, and we had no idea.  We were sleeping 25 feet away and were clueless that he was struggling, panicking, having trouble breathing.  It’s every parents’ worst nightmare and for me, it seems to be a real possibility.  Trying to sleep or focus on anything right now is difficult.  Friday (our next appointment) can’t come soon enough.