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:

– We revisited the history of reactions from December (what Dean ate or received in meds, the symptoms, the timing) with our allergist.  Ultimately, she still suspects ibuprofen and possibly some new foods.

– We performed a skin prick test of all the suspected foods: shrimp, oats, soy, green beans, coconut, clam, chocolate peppermint mix (in cookies I made).

– They look for a positive reaction: center bump >3 mm compared to a negative control (saline-#1) and positive control (histamine-#2).

– Oats, shrimp, and green beans were borderline positive.  All others were negative.  She followed up with blood testing to compare results and added crab, scallop, millet, and guar gum (which is from a legume).

Dean cried during all of it which was more than I could bear given all he’d been through the previous weeks.  I was grateful when Matt joined us after Kate’s nap to get his blood drawn.  I couldn’t handle being there because I just cannot listen to him cry anymore.

– Green beans, shrimp, soy, and millet came back positive.  The oat test was inadvertently canceled so reordered.  She suspects some false positives.  Given that Dean had an ear infection, suspected roseola, and suspected reaction to ibuprofen, she thinks that his high state of infection/inflammation may have caused false positives or abnormal allergic reactions to foods he can tolerate when healthy.  However, for now, we’ve been advised to avoid these items and minimally get his body back to a state of ‘normalcy” again.  So the full list is now: gluten, eggs, peanuts, tree nuts, avocado, sunflower seeds, legumes (including green beans* and soy*), shrimp*, millet*.         *possible

– Given his severe reactions to wheat, his emergency plan was updated to give an epi-pen immediately if a.) symptoms are present and wheat consumption is suspected, or b.) wheat was known to be given even if there are no symptoms yet.

– We also discussed other underlying medical conditions that could be causing his body to be reactive to so many things.  She ordered routine bloodwork, checked his thyroid, liver/kidney function, and other autoimmune diseases.  Multiple tests showed a high state of infection or inflammation (of course!).  Average IgE antibody levels at his age are 3.2 kU/L.  An adult’s is 13.2.  His was 798.0.  This shows how hard his body is working to combat eczema, environmental allergies, and food allergies.  A couple results for his liver and kidneys were abnormal, however could have been due to his state at test time so we’ll repeat in a few months.  No indication of thyroid issues or autoimmune disease.

– She referred us to an allergist at Children’s if we wanted a second opinion.  Matt and I are still debating whether bringing him there will offer up any different answers.

– Since then, Dean’s been slowing feeling more healthy and we’ve only had to give him Benadryl once since eliminating all the newly suspected items…progress.

So this brings us to present.  On Monday, Dean’s daycare called.  He was having a reaction and were going to give him Benadryl.  Something seemed “off” in our conversation and motherly instinct told me I should go over there.  His entire body was beet red, he was itching, had some minor hives, and was uncomfortable.  Without getting into the details now, through a mix-up, Dean was given an entire bowl of wheat pasta for lunch(!). 

Every reaction manifests itself in a different way.  Even though his plan was updated to immediately give the epi-pen, I was unsure whether to because his reaction didn’t seem as bad as the last two.  I called the doctor, walked through his symptoms, and when they told me to give it, I instantly burst into tears.  All I kept thinking was, “I cannot keep doing this.  I cannot keep doing this.  I’m going to break.  And this kid is going to break.”  It didn’t help that I’ve been so busy and stressed out at work and being worried about Dean’s allergies adds another layer of stress.  A person can only handle so much and this was my breaking point.  Looking back, I’m disappointed in myself that I couldn’t have been stronger during that crucial moment.  I had to ask one of the staff members to give him the epi because I was a wreck.  It broke my heart to see him cry.  Afterward, he buried himself in my shoulder, and we just sat, rocked, and sobbed together.  It was a moment of raw uninhibited emotion, and we buried ourselves into each other, drowning in our tears, sorrow, and hurt.

I had completely forgotten that I was supposed to call the doctor back after 5 minutes because we discussed holding off calling 911 until we could speak again.  This time around, he didn’t immediately respond to the epi.  He was still red, itching, and had some hives so they told us to call for an ambulance.  Dean and I rode to the hospital together, and Matt was already there when we arrived.  Now that Dean is starting to talk, it was so difficult to hear him just repeat, “Momma, momma, momma, momma” with his little arms reaching for me as two doctors and two nurses examined and hooked him up to monitors, asking us what happened.  They also gave him a steroid.  Everything was stable with his heart rate and oxygen level; we were told we’d be there for at least four hours for monitoring.  After three hours, the doctor was still concerned that he was so red and checked his temperature rectally to make sure he didn’t have a fever.  He didn’t.  After reviewing his weight and Benadryl dose, they decided to give him one additional mL and added Pepcid which also acts as an antihistamine.  Having missed his nap and maybe feeling more comfortable, he finally fell asleep.  We were discharged an hour later.

Ironically, it’s been almost a year since his last ER visit.  Being there reminded me of last January when we first learned that he had allergies and everything that we’ve been through the last year: 2 ambulance rides, 2 ER visits, and 2 epi-pen instances (one of which we did not go to the ER) so three severe reactions in the last 12 months and too many minor ones requiring Benadryl to count.  Given that we’re only two weeks into 2015, I sincerely hope this is not indicative of how things will go this year.

Life is so precious.  The time we have with our little ones is so precious.  I am personally on a mission this year to make more time for myself and my family to enjoy that time together.  You never know how long it will last.