Food Allergies

March 6, 2010, the day after his anaphylactic reaction.  One of the few pictures I have from his hospital stay.

On March 4, 2010 I took Luke to an allergist to be tested for milk and cinnamon allergies. From the time he was a couple weeks old, up until that point, he had serious gas and constipation issues. He constantly sported what they call allergy shiners (dark circles under the eyes), eczema on most of his body, rough patches of eczema on the side of his face that took forever to get rid of, and a constant runny nose with lots of mucus and sneezing. I was convinced that it was a dairy issue, because it got much worse when we introduced whole milk, and got a little better when we switched to soy milk. The cinnamon was a concern because a couple weeks earlier, while eating a jar of cinnamon raisin oatmeal baby food, his face broke out in hives. The hives came and went over the next two days.

The allergist we saw was less than helpful. He did a skin prick test for milk and cinnamon, both came back normal. He made me feel like I was some crazy, over protective mom the entire time that I was there. Which made me mad. I KNEW I wasn't imagining things. I KNEW that I wasn't making things up. I KNEW that something wasn't quite right with Luke all those months. He told me there was no reason to come back, and sent us on our way.

The next day, March 5, 2010, Cody, our oldest, was eating a peanut butter and banana sandwich for breakfast. Luke was fussing, wanting a bite.  He was almost 16 months old, and I had been thinking about letting him try peanut butter (Cody was 15 months when he first had it). We have no family history of nut allergies in our family, so I felt ok with letting him try. Luke took two small bites. The first bite he enjoyed. The second bite not so much - he pushed the sandwich away and wanted nothing to do with it. I mentioned to my husband that the last time Luke shoved food away like that he broke out in hives (the jarred baby food incident).  A minute or so later Luke was vomiting.  I took him back to his room to change him, and Luke was frantically rubbing his right eye. I took his hand away from it, and the eyelid was swollen and covered with flesh colored welts. I gave him 1/2 a dose of Benadryl (he spit out the 2nd half) and called his doctor. They told me to give him the other 1/2 of a dose, and watch for breathing problems. We were to call 911 if he had trouble breathing.  While talking to the doctor's office on the phone, Luke was sitting up on the changing table leaning against me.  When I got off the phone I realized he was what appeared to be asleep.  I now know that he had lost consciousness due to the severe drop in blood pressure, as part of the anaphylactic reaction.

My husband left for work, and I sat on the couch with Luke while I called my mom.  About 20 minutes later Luke vomited again, twice. I was starting to worry, so I asked my mom to come over.  After I cleaned him up, we sat again, and he became very lethargic.  His head was a little floppy, and he was sleepy.  He was very fidgety.  I kept him on my chest so I could hear his breathing, but I never noticed a problem (this is important - a person DOES NOT have to have obvious signs of trouble breathing to be experiencing anaphylaxis.  This is a huge misconception and can be a very dangerous one if it causes someone to miss other signs of anaphylaxis) During this time I was also using the laptop to look for a new allergist, as I knew I wouldn't take him back to the same doctor.  I then noticed that he was very pale - his lips and face had absolutely no color to them.  His lips were beginning to take on a blue tinge.  I noticed that he had hives under his chin that weren't there earlier. My mom arrived just as I was laying him down to unzip his PJs.  He was covered in angry red hives from his chin to his groin.   He looked like he had the worst possible sunburn.

My mom took him, and I called the doctor's office again. They told me to call 911. When I did, they told me to lay him down flat (which I later learned is because having them reclined or upright can increase the chances of them going into cardiac arrest), and to call back if he started struggling to breathe. The firetruck arrived first, and they were unable to get an oxygen reading on him. The ambulance arrived not long after and took over, and they too were unable to get a reading. One of the two EMTs wanted me to just take him to Luke's doctor's office because it is so close.  To quote him, "a doctor is a doctor".  The doctor's office didn't want to see him though, as they knew they wouldn't be able to treat him, so we were transported to the ER. Before we left, the 2nd EMT noted that Luke's lips were blue.

The trip to the ER was excruciating.  The EMTs did not handle the situation as they should have.  They were very lax about the entire thing, from the time they got to our house.  The one EMT that wanted me to take him to the pediatrician continued to make light of it, acting as though I was over-reacting and that it wasn't a big deal.  The EMT driving took the long way to the hospital, and did not use lights or siren on the ambulance.

{I now know to ask for an Advanced Life Support (ALS) ambulance to be sent if we ever have to give epinephrine again.   ALS ambulances are equipped with epinephrine, and the EMTs are trained for how to deal with anaphylactic reactions.  The ambulance that came to our house that day was a Basic Life Support (BLS), and they do NOT have epinephrine, and going by my experience, are not trained in anaphylaxis as well as they should be.  I also know to insist on being taken to the emergency room should anything not seem right.  It haunts me to think of what may have happened if we continued to sit in the living room going back and forth on whether to take Luke to the ER.  If I could do it over again, I would either insist from the first minute they came into the house that we were taken to the ER, or I would have taken him myself.  Those precious minutes could have changed the outcome of that day.}

Once at the ER they put us in a room immediately.  The EMT had called ahead to let them know they were bringing in a possible food allergy reaction, and they were waiting for us.  I went from feeling like the EMTs weren't taking the situation seriously, to feeling like we were finally in good hands.  The staff in the ER were definitely taking it seriously.  Luke had four nurses working on him. They finally got an oxygen reading (and I later found out that it was very low, in the low 60's when it should be 95-100) and connected an oxygen tube to his nose, with it taped down because he kept ripping it off. They gave him a breathing treatment with a nebulizer, and started working on getting an IV into him. This took an hour, with all four nurses trying to find a vein. They finally got to the point where they were going to just give him the steroids in the muscle of his leg, but the head nurse was able to find a vein by turning the lights off and shining a flashlight on the underneath of his arm.

It was the most helpless that I have ever felt. Luke laid on the table, staring at me and crying through most of this. All I could do was hold his hand and promise to not leave him.  I prayed to God that my little Luke wouldn't die.  I was so scared that I was going to lose him.  Luke hated the oxygen in his nose, and kept holding his breath because of it.  Every time he did, the nurse would blow into his face to get him to take a breath.  And every time he did, I panicked thinking that he wouldn't take that breath.  It felt as though the entire ER was watching.  They had the door to his room open the whole time, as there were nurses and doctors constantly in and out.  People stood at the central desk watching.  A patient's advocate came in and asked me if I was ok, I just cried.

Luke was finally stable and asleep, and a doctor came in to speak with my husband and me.  He informed us that Luke was very lucky, and that his allergy was extremely severe.  He cautioned us about making sure that he never ingested anything with nuts in it again, etc.  He was wonderful and spent a lot of time sitting with us.

After four hours we were sent up to pediatrics where Luke continued to be connected to various monitors until he was released at 10am the next day, 24 hours after being admitted. Thankfully his vitals were great during his stay in pediatrics. The Potomac Hospital ER staff did an excellent job treating him and getting him to that point.

We left the hospital with prescriptions for 3 days of steroids and a duo pack of EpiPen Jr. The EpiPens go everywhere with Luke now.

Luke now sees a wonderful allergist. He was tested for peanut and tree nuts, and was positive to both. He is definitely anaphylaxic to peanuts. We don't know about tree nuts, because it's not worth the risk to do a food challenge, the only true way to determine how severe an allergy is.  We also learned the hard way that he is anaphylactic to egg.  I unfortunately don't have a description of the ER for that one, because we didn't know at the time that he was experiencing anaphylaxis.  The story of that can be found here:  Regrets.

2010 was a hard year.  Two anaphylactic reactions, 4 rounds of pneumonia (plus one in late 2009), asthma diagnosis, immune deficiency scare.  But we got through it, and if nothing else it has made us stronger.