Sean's Food Allergy Story
My sweet boy Sean has food allergies. He is allergic to…are you ready…peanuts, tree nuts, wheat (he outgrew this one!), dairy, soy (outgrew this one too), eggs, sesame seeds and bananas!
When Sean was an infant he couldn't tolerate milk based formula. He would puke, scream, cry and curl his little body in pain. He was put on Soy formula. He would still spit up pretty bad, but most babies do. But he had horrendous eczema. He would scratch until he bled. Night time was the worst. He would be up all night scratching and crying which in turn I was up all night, sometimes crying! His little face was raw and red all the time and his hands and feet had horrifying scabs. He was a fussy little guy and could never be still, we thought he just didn't like to be held, unlike our other son who was such a cuddle bug. I felt like there was something wrong, I felt like he was uncomfortable. I questioned the pediatrician about giving Sean the soy formula thinking maybe he couldn't tolerate if or I even asked if he could be allergic to it. The doc reassured me that giving him the soy formula was the right thing to do.
When Sean was six months old I gave him some cheerios, his hands turned red and had little hives on them that were of course itching him like crazy. He also had a rash around his mouth. I thought, I'll mention it at his next appointment. One day I gave him Yobaby yogurt. Eeeek, did he turn red and itchy. I thought wow he is really "sensitive" to dairy! Again, made a mental note and would mention it at his next appointment and I didn't try anything new.
At Sean's 9 month appointment I told the doctor about our little incidents. He said maybe it's time he do some food allergy blood tests. So we did. Two weeks later, I was at work and the doctor called to say that he had some "interesting" results. He proceeded to give me the laundry list of things Sean was allergic to. I was in shock. I said should I be feeling as anxious and nervous as I feel right now. And he said "no, just pretend that you live in a village that doesn't have those foods". Umm….but I don’t live in a village that doesn't have those foods!!! I honestly love our pediatrician. I know he was not saying something like that to be insensitive or brush it off. I know in his heart he was trying to calm me. Let me tell you my head was spinning. I knew that one woman at work had a son with food allergies. Holding back tears, I went straight to her office. She was a wealth knowledge about with websites, stores, what to buy, etc. I started to feel a little less panicked...until I got home...
I went home and held my Seany and cried my eyes out! Then I attempted to go to the store and read labels and until I was literally dizzy and felt like I was going to hyperventilate right there in the "health food" aisle. I got him a few staples and he was still eating baby food—veggies and fruit. I gave him rice milk, (who knew such stuff existed!) he loved it, he still loves it, I would say he is addicted to it. Once I took him off the soy formula, after a day or two he was a completely different baby! He was so calm and so happy. Turns out he is a little snuggle bunny! To think that we thought he just wasn't cuddly or that we had a hard time bonding with him made my husband and I cry. It was because he was miserable for the first 9 months of his little life!
For the first few weeks, I would find myself in a store looking for stuff for him, feeling panicky and somewhat sorry for myself. After the fog had lifted, I decided that I needed to do something, that playing poor me wasn't helping anyone, especially Sean! I read everything I could get my hands on. We were referred to an allergist and then I took the advice of a co-worker and I made an appointment with a Wendy Elverson, a nutritionist at Children's Hospital. She gave me a boatload of information, ideas, recipes and websites. She put him on a prescription formula called Elecare. He loved it and stayed on it until he was almost 2.
So far with him I have only had to use the epi-pen once. He ate some french toast that he wasn't suppose to eat. I was instructed by the nurse to give him the epi-pen because it had a lot of ingredients that he was allergic to. He only had a bite of it and he broke out in huge hives. In hindsight I think Benadryl would've done the trick but you never know. Giving the epi-pen was really scary, the thought of it still makes me cringe.
Once, he was just getting over being sick and had been on antibiotics and ear drops. He keep waking up crying, I finally turned the light on. His eyes were all swollen and he had huge reddish, some almost purple dots all over his body. My husband and I were like WTF is this?!! I gave him Benadryl and nothing happened so I took him to the ER. They gave him steroids. It took hours for him to look normal again. They think maybe he was reacting to the ear drops because they had sulfur in them. There is no way to test for a sulfur allergy.
Another time Nolan was eating a scrambled egg and went over and touched Sean's face (actually I think he jammed his finger in Sean's mouth, he was 2 at the time), Sean's eye swelled and he had red blotches all over his face. We are much more careful when eating eggs now. For a long while I didn't even have them in the house. Now that Nolan is a little older he knows to be careful and to wash his hands after.
The banana one was a little on the scary side. He had been eating bananas since he was 4 months old. One day he turned pale, almost grayish and was pulling at his lips and then he threw up. A banana was all he had eaten that morning. I stopped giving him bananas and then asked that he be tested a the next allergy appointment and sure enough he was allergic! I was pissed. I guess they can form new allergies to things they have been eating all along or maybe he was always allergic but just never had a reaction. Yes, it is mind boggling!
We have had numerous minor reactions just from Sean touching things. One time he grabbed Nolan's milk and for some strange reason he splashed it on his face. He went crazy from the itching that ensued almost immediately. Thank God for Benadryl.
I know he can't live in a bubble forever so I try to not scare him but talk to him about it regularly. He should outgrow most of these allergies in a few years. But probably not the peanut and tree nut one. This one scares me the most! He has never had peanut butter or nuts and we don't keep it in our house. We try to live a normal life and not live in fear. It is difficult when you are out in the real world and it is all around you. Some days are definitely tougher then others.
I know as Sean gets older things will become much more challenging. He hasn't had playdates or gone to a birthday party without me. His preschool is peanut/tree nut free and are really careful about his other allergies. When he first started going to this preschool, it was NOT peanut/tree nut free. But my other son went there and had the same teachers and they all are fully aware of Sean and his allergies. Everyone assured me that he would be safe. I will never forget dropping Sean off for his first day. Of course you tear up on their first day of school as I did with Nolan but when I dropped Sean off, I got in the car and I couldn't stop crying. My husband was off that day. Our plan was to take advantage of our few hours freedom and go out to breakfast. I had to sit in the car for 20 minutes to get myself together before I could go in the restaurant! It was the first time he was completely out of our control, it was scary. But like anything it got better and now they are peanut/nut free so that is one less thing to worry about until Kindergarten!
February 9, 2012
Today we did a food challenge with wheat at the allergist office. The numbers on Sean's blood test for wheat where low. Today we did a skin test and it came out negative! They told us to bring some wheat crackers and it the skin test was negative we could try giving it to him. They gave him a quarter of a tablespoon 4 times every 15 minutes. He was absolutely fine, no hives or rashes! He wanted to keep eating the crackers! I asked the doctor if we had to gradually introduce it into his diet or could he have a bowl of pasta right away...she said give him the pasta! We are so excited. This opens up a whole new word for Sean and gives ups hope that he will outgrow the other foods - I don't expect that he will ever outgrow the peanut or nut tree but you never know.
February 9, 2012
Today we did a food challenge with wheat at the allergist office. The numbers on Sean's blood test for wheat where low. Today we did a skin test and it came out negative! They told us to bring some wheat crackers and it the skin test was negative we could try giving it to him. They gave him a quarter of a tablespoon 4 times every 15 minutes. He was absolutely fine, no hives or rashes! He wanted to keep eating the crackers! I asked the doctor if we had to gradually introduce it into his diet or could he have a bowl of pasta right away...she said give him the pasta! We are so excited. This opens up a whole new word for Sean and gives ups hope that he will outgrow the other foods - I don't expect that he will ever outgrow the peanut or nut tree but you never know.
