I can’t believe I haven’t posted an update since a year ago.  Where does the time go?

The last few weeks have been emotional for many people on many levels and for us, this has been no different on the allergy front.

We had Dean’s annual check-up on October 5th.  We only tested the borderline allergens, 9 of them, to see if any of them have decreased enough to try an oral food challenge.  This process gets tougher each year as Dean is old enough to understand what is about to happen and able to articulate his feelings.  While we know this testing is in his best interests, it doesn’t make it any easier to go through.  As he is pricked with a needle a total of 13 times to test 9 allergens + 2 controls, draw blood, and get a flu shot while we’re at it, his tears and cries of “Ow!  Mom!” and that look of ‘help me’ in those big brown eyes bring me close to tears each time.  In his blood testing, the same 9 allergens are tested in addition to his more severe allergens, a total of 21.

His most severe allergy that we’ve experienced, wheat, increased from 42.1 IgE (class 4) to 53.2 (class 5) and peanut increased from 80.5 IgE (class 5) to >100.0 (class 6), the highest level.  Our allergist told us to be prepared that peanut exposure would likely be severe.  I’m terrified to know how severe that could get.  I have a co-worker whose son loses consciousness when he eats peanuts.  I couldn’t even imagine being in that situation where every second to Epi-Pen administration is critical.

If there was some good news, our allergist said that his levels for sesame, lima beans, pecans, and walnuts and still higher than zero but have dropped and if we wanted to push it, she’d be open to oral challenges.  The thought of introducing a tree nut seems unfathomable!  We are scheduled for the pecan challenge in January.  Wish Dean luck!

On October 16th, we did our annual fund-raising walk for FARE (Food Allergy Research and Education) as a family.  We raised an amazing $2,220.

Dean had been up several times the evening before coughing and didn’t seem himself all morning long.  He opted to sit in the stroller for most of it so we assumed he was just tired.  During post-walk lunch, he really seemed to be fading fast.  Matt had him laid across his lap, and I noticed that his belly was moving up and down extremely fast. He appeared to be breathing very shallow as well.  Matt suggested we get the car, pack up our food, and leave to get him home to nap.  During our ride home, my gut kept telling me something didn’t seem right.  I called the pediatrician and after speaking with the nurse and counting his breaths (71 breaths/minute versus normal ~35), she recommended we go to the ER.  Here we go again!

We were there for 4 hours and due to low oxygen levels and rapid breathing, Dean received four breathing treatments.  He still wasn’t where the doctors wanted him to be and after consulting with the head attending doctor and pediatric specialist, they suggested that we move him to a room for overnight monitoring.  An hour later, we were moved upstairs and Matt and Kate (who were at home) brought Dean’s and my clothes, books, toys, dinner, and breakfast.  After two hours there, his oxygen level seemed to be increasing and stabilizing so the specialist suggested they give him an inhaler, see how he looked after an hour, and would release us if OK.  During most of this, Dean was a wreck for the first 2 hours, crying uncontrollably at the doctors and nurses giving him meds (steroids, fever-reducer), measuring his temperature, monitoring his oxygen, and checking his blood pressure.  Having just been to the allergist, he was so worried about getting more shots.  After the head attending doctor came in after two hours and promised Dean there would be no shots, I saw Dean smile slightly and he significantly calmed down from there on out.  Poor guy.  We were released 8 hours after arriving.

For the next 24 hours, we had to give him an inhaler every 4 hours, follow up with the pediatrician, and then wean him off the inhaler (and steroids) for the next 3 days.  Work has been so busy and stressful the last few months, these moments really test my mental fortitude.  It’s so difficult to keep up with my professional and mom responsibilities, and I still struggle to find balance in achieving both.  While I know Dean and family take priority, it is difficult to be away from the office during these times because that means I just fall further and further behind.  The other challenge is we were set to go out of town that following weekend which thankfully, went off without a hitch!  The doctors think his asthma was viral-induced so let’s hope it was a temporary one-time thing.  Food allergies, eczema, and asthma go hand in hand so I’ve always been on watch for it.  It’s been something I’ve feared as treating someone in anaphylaxis who also has asthma is much more challenging.

Once we arrived back in Chicago on Monday, October 24th, we were right back into it.  We picked the kids up from school, excited to be reunited, and Matt noticed that Dean had a few hives on his neck.  This happens at times when he gets into something, e.g. grass, food, etc. which usually resolves after a quick wash with soap or a washcloth wipe with water.  It didn’t seem to so I gave him Benadryl, put him to bed, and checked again before going to bed myself.  All good.  By morning, however, his hives had progressed to his stomach, armpits, and groin area.

I didn’t know if this was also viral-induced given his asthma a week prior or if he was having a food reaction. I gave him Benadryl, waited an hour, and when he seemed to be getting better, decided to bring him into school, again with the conflict of being a good mom and loyal employee (having just been off for two days on vacation) tearing at me.  I checked in with school late morning and everything was still good.  Whew!  After nap, school called and I knew right away something was going to be wrong.  “Dean’s reaction seems to be worse.”  I asked if they could quickly send me a picture to see how much worse.  Meanwhile, I shut down work, threw everything in my backpack, called Matt, and flew out, tears streaming down my face.  ‘I can’t believe this.  I should have stayed home with him.  What was I thinking sending him to school and not keeping him within my watch?’  I saw the picture came through on my phone as I got to the car and my heart sank.  ‘Oh shit.’

‘This isn’t just a rash.  He could be in anaphylaxis.  Should school give him an Epi-pen?  Can they wait until Matt or I are there?  What should we do?  What should I do?’  I called Matt.  He was 10 minutes away and said to wait until he got there to assess the situation.  Meanwhile, I called the doctor.  We had already made an appointment to bring him in later that afternoon but I called to see if we should just go to the ER or get him in earlier.  Once I arrived to school, I actually felt a sigh of relief upon seeing Dean.  After another dose of Benadryl, the hives had subsided, and his personality seemed great – very happy, playful, and normal – and he was barely itching.  He exhibits a very specific behavioral change when he’s having a severe reaction and the signs were not present. We decided to bring him to the pediatrician.  We were all on the fence as to what was going on, decided to add Zyrtec, and agreed to keep watch and give him an Epi-pen if the situation got worse. Thankfully, the hives lessened over the next 24 hours; we will never know for sure what really happened.

Bring us to five days later, October 30th.  We were enjoying a lazy morning following our adult Halloween party.  Kate had a friend sleep over that night, and we all went out to breakfast together.  We packed up Dean’s lunch but decided to order a bowl of fruit for him there.  An hour and a half later, Matt noticed Dean’s face was starting to look red and puffy.  We noticed he was starting to scratch his neck and a few hives were breaking out.  More started coming, and we could tell he was starting to get agitated.  He said his tummy hurt, thought he might throw up and went to the bathroom.  ‘I have a very bad feeling about this.  The fruit probably got cross-contaminated with wheat in the kitchen.’  I kept asking him if he thought he was having an allergic reaction, he kept saying no, and as I saw more hives and itching going on, I told him I was going to take off his clothes to watch how his body was looking.  The hives, redness, and itching was spreading, I kept asking Dean if he was having a reaction, that I thought he was, and he finally said yes.  I told him I thought we needed to give him an Epi-pen, and he immediately rescinded his response, bargaining with me, “No, mom.  No, mom.  I’m OK.  I’m OK.”  This had to be one of the most emotional experiences for me.  To watch your kid plea with you that his body is not undergoing severe distress to avoid a life-saving shot is so painful to witness and at that moment, I could barely keep myself together.  Recently going through those 13 needles at the allergist, recent ER visit, a potential “near miss” five days earlier, and now this, it was too much to witness and bear.  “I’m sorry honey.  I know you don’t like the shot but you understand that the Epi-pen saves your life?  You will feel much better after you have it.”

As we brought Dean to the couch, I asked him, “Who do you want to give you the Epi-pen, mom or dad?”, Dean said, “Dad.”  Matt laid him across his lap and said, “You don’t have to watch”, put his arm over Dean’s eyes, and we said, “1, 2, 3”.  Matt gave him the Epi-pen, 3 seconds in his upper thigh, Dean cried out, and tears streamed down my face.  It was one of those slow motion moments, and I felt like I was watching a scene in a movie.  For as much as I try to remain strong for Dean and our family, I just could not do it anymore.  Dean sat up and we all hugged each other so tightly.  “Family hug, family hug.  You are so brave honey.  You are the bravest boy I know.  I love you so much.”  In that moment, I wept for all that Dean has to go through, for all the stress and worry we have to endure, for my moment of defeat in trying to keep up with my career and our family needs, and for how unfair life for Dean.  I never ever want him to feel that his medical condition is a burden to us or an impediment to his life and dreams, but at that moment, it all went out the window.  I was hurting and aching for this wonderful and loving boy who has to go through so much and for how stressed I was with work, life, and all my aspirations of being a working mom who can do it all.  In that moment, none of it was possible.

We dropped Kate off at a friend’s and took Dean to the ER.  The doctor recognized us from two weeks prior – lovely.

We’re two weeks later without incident.  I hope we keep going.  For me, life seems clearer that I need to make changes to find better balance, both for myself and our family.  Lately, I’ve been feeling like the kids’ lives are flashing before me, and I’m missing out at this precious time.  I hope to fix this for 2017.  Thanks for all your love and support.

 

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