Note: This is not my usual comical post. This had been a bit of a stressful week. I’ve had a lot of requests to explain all that went on with my son’s peanut allergy. I figured this was the best way to explain it all.
We have known about Memphis’ peanut allergy since before he was a year old. Piper was eating a cheddar and peanut butter cracker. She had taken the top part off to eat. Memphis grabbed the part that still had the peanut butter on it. The second it touched his lips they swelled. He didn’t even have a chance to get it in his mouth. I gave him Benadryl and it went away. I asked the pediatrician about it and he said to wait until Memphis was a year old “and try again”. I didn’t feel that was the right thing to do. Thankfully Piper had an appointment with her allergist and I was able to talk to him about it. The allergist was shocked and said under no circumstance were we to try again. Just proves you should always follow what you gut says!
A few months later, we had Memphis tested for peanuts and other foods. The skin test showed instantly that he was very allergic to peanuts. The bump got so big it took over other bumps. He was on the line for tree nuts, beef, and dairy. They sent him for a blood test next. For two weeks we had to avoid all four of those foods until the blood test came back. It’s pretty hard to find food that doesn’t contain or isn’t contaminated with those items that a less than 1 year old will eat. His blood work showed he was only allergic to tree nuts and peanuts. (By the next year he had out grown the tree nut allergy.)
My first trip to the grocery store after his new diet restriction took about 2 hours and involved a lot of tears. Over the years I have gotten a lot faster at reading labels and I don’t cry anymore. For those of you who are lucky enough to not have knowledge in the food allergy area, there is a lot more than looking at something to see if it is peanuts or peanut butter. You have to read labels. If an item has no peanuts in it, it doesn’t mean it’s safe for Memphis to eat. There is cross contamination. Even if a food is made in the same factory as something else that has peanuts, it could be deadly for Memphis. A bag of chips that was safe for him last week may have a new label this week stating there could be cross contamination. And then there is peanut flour. It’s in things like soup. Peanut oil (like Chick-fil-a uses) is technically safe, because the protein has been removed, but there is always a danger of a small piece slipping through.
We began taking Memphis to Duke Children’s Clinic about 4 years ago. They have a Food Allergy Clinic (specializing in peanuts) that is known worldwide. Dr. Wesley Burks is widely known for his work with peanut allergies. He started a peanut trial. If a child has a peanut allergy that isn’t too high and not too low they get participate in a study. You are given either a placebo or a very small dose of peanut. As time goes by the peanut dose is upped. Eventually if it works right your body will learn to not to overreact. If you get the placebo the first time around you are guaranteed the real thing the next time. Memphis has always been just a tad too low to get in on the study. Very bittersweet!
Every year we go back to Duke and have him tested so we can keep an eye on his levels. One year he can test high and the next low. The level of histamine in your blood changes from year to year. There is no clear answer. This past spring Memphis’ skin test was significantly smaller (still there though) and his blood test showed an even lower level. For most people it’s the other way around (skin test lower than the blood test, but Memphis is just as odd as his mom). Because the two tests were low enough the doctors at Duke suggest we do a “Peanut Challenge” to see if he had out grown his peanut allergy. Josh and I agreed that it seemed like a good idea.
Last Tuesday, I took Memphis to Duke for what we hoped would be the last time. We set out for our 2 hour drive at 5:30am. His appointment was at 8:30am, but we were worried about hitting rush hour traffic. Memphis was excited and talked almost the whole way. He loves going to Duke. Their children’s hospital is amazing. He was also excited to try peanut butter for the first time.
We got there with plenty of time to spare. At first they didn’t have any rooms available and asked us to wait in the lobby for a while, which was fine because they have movies and toys there. Within 10 minutes we were called back. They checked his weight and blood pressure and temperature. Everything was normal.
We got set up in his room. Not long after the Nurse Practitioner, Ginger, came in. She is the one in charge of the food challenges. We also had an assistant and pharmacy tech. Those three remained with us for the entire time. There was also a Doctor and med student at our beckon call.
Memphis was first given a pea sized amount (maybe smaller). He loved it. Most peanut allergy kids don’t like the taste and/or texture, but he loved it. We waited 10 minutes. I was excited because his lips didn’t swell on contacted. There was no reaction so Ginger upped the dosage and we waited another 10 min. No reactions. She up the dosage again and there was no reaction. Then we got to the 4th dosage. Before Ginger could even set her timer Memphis started turning red. We began looking him over for other symptoms. He started coughing and his nose began to run constantly. At this point, he said “I don’t feel good and I don’t want any more peanut butter. It is making me sick.” Memphis then told us he felt nauseous and his stomach hurt. Next he developed hives. They looked like bug bites. There was one on his cheek, one his back, one on his tummy, one on his thigh, and one on his calf. Interestingly, all the bumps were on his right side. Benadryl was immediately given and they took his vitals. His blood pressure wasn’t great, but out of the danger zone either. He was wheezing a lot and beginning to have trouble breathing. They did a pulse ox (the red glowing E.T. thing that measures oxygen in the blood). It was low enough they wouldn’t show me and I didn’t bother fighting it. I could tell it was incredibly low. He was turning blue. We couldn’t give the Benadryl time to work, because he was going downhill so fast. So epinephrine was given. This was all a blur; I remember hearing murmuring of being prepared to intubate him if the epi didn’t work within a matter of seconds. Thankfully in 10 seconds, Memphis began to turn around. The redness left his face and eyes. His pulse ox went up to 92 and the staff was very happy. To give you an idea, normal is around 98 or higher. 85 is danger zone. I still don’t know how low Memphis’ was, but I do know it was below 85.
Next Memphis was given a nebulizer because he was still wheezing a considerate amount. They were going to give him 5 minutes with the nebulizer and check him again. If he had not improved another shot of epi would be given. Thankfully he a lot better and his pulse ox went up to 99.
At first we were told, we could go home in two hours. The staff checked on him every ten minutes. Memphis asked to watch Scooby Doo. One nurse went and brought us every single Scooby movie on the floor. Memphis was afraid to let go of me so we snuggled on the bed together. We were asked by each staff member that came in if we wanted a blanket or pillow. Both of us were still so shook up that just having each other was enough and we said no. Then one nurse came in and just gave them to us. Another nurse offered to stay with him if I needed to step away for a bit. She acknowledged that I had every right to be scared to death and if I needed to go somewhere and let it out she would stay with Memphis. I just couldn’t let go of him and she said she understood and just to let her know if I needed anything.
Memphis was getting sleepy from the reaction and Benadryl. So he dosed for the two hours. At 1.5 hours, the nurse said he was doing so well that that they might let him go early. Ginger came in and explained that in 10% of food allergy patients, a late secondary reaction can happen. It’s similar to the original reaction just not as severe. Since I was by myself and we had a 2 hour drive with very little hospital options along the way, we made the decision to stay another 2 hours. A little bit later one of the nurses came in and said we could sneak out to the cafeteria for lunch. We couldn’t leave the grounds and had to promise to head back to the room if anything changed.
Well, I was in no shape to say no to Memphis, so for lunch he had jello, frosted flakes, chips, and sprite. Half way through lunch, he said his stomach was bothering him. So we ran back up to the room to be checked out. Everything was fine, but they wanted to give him another dose of Benadryl before we left. At 2:30pm, he was given the last dose and we were sent on our way. Memphis was given a free puke bucket just in case.
It was incredibly hard to put him in the backseat. I really just didn’t want to let go of him. I compromised and turned my rearview mirror so I could see him. Every once in a while I needed the reassurance that he was still there and ok. I would quietly reach my hand back and he would grab it. He never once asked why or what I wanted. He never asked me to stop. Even the millionth time I asked if he was ok, he didn’t complain. A few random times he told me he loved me.
Had we not been at the hospital, there is a chance we could have lost Memphis. It made me think about all the things I would miss. I would miss our special way to say “I love you”. I say “I love to infinity and beyond” He responds with “I love you to infinity and beyond and back. I am Buzz Lightyear I come in peace” I would miss his creativity. You give that child an empty box and he can create the coolest fort known to man. I would miss his love of music. How else would I know all the words to songs like “Crazy Train” and “Cricket on a Wire”? I would miss his carefree goofiness. I would miss everything about him. Yes, even his strange habit of stripping off every piece of clothing (even socks) to go poop. So hug your kids if you got them or grab someone else’s and hug them. They may be annoying and make your hair grey, but every second is worth it.