This post will be long, honest, and probably depressing. I apologize ahead of time. I just need to get it out.
Being a mom has been the most amazing, most rewarding and most unpredictable experience of my life. When I was pregnant, I thought we were ready but in reality, my husband and I had no idea what was in store. It’s true when they say that nothing can prepare you for parenthood – nothing. I will never be able to describe to someone the love that comes immediately when you give birth to your child.
Another thing I wasn’t prepared for was the worry that would come along with that love. From the second my son was born, I wanted to protect him from the world. I remember when we were finally able to bring him home after 5 days in the hospital, I wanted nothing more than to get rid of our dogs. I was so scared they were going to hurt our precious little boy, but I got over that! I spent many nights checking to make sure he was breathing, and the first time I left the house all by myself, without him in tow, I was a nervous wreck. That worry, I know, will never go away. It will change as he gets older and it will mold into new kinds of worries, I’m sure. I know that I can’t shelter him and that I can’t protect him forever, but oh how I wish I could!
I wasn’t prepared for most of what motherhood threw at me, but what really turned my world upside down was when I found out that my son had food allergies. No one in my family nor my husband’s have food allergies, so it just wasn’t something I was thinking about. What’s ironic is that we were literally talking about food allergies at the same moment my son had his first allergic reaction. He was 9 months and was eating scrambled eggs. It was the third time he had eaten eggs and didn’t react with the first two exposures (very typical of food allergies.) Eggs are one of those foods that some say to wait until they’re over a year to give, while others say they’re fine to give earlier. We were staying at my parents’ house at the time since we had just moved from Oregon to Michigan. We whipped up some nice scrambled eggs for breakfast and my son began scarfing them. He loved those eggs! I was thrilled because he was usually a picky eater.
I started talking about how I was just reading a study that showed it didn’t matter if you introduced eggs before or after the 1 year birthday, that the risk of having an allergy was the same. It was then that I did a double take at my son’s face. “He’s having a reaction!” I screamed. He had bright red welts all around his mouth. We quickly cleaned him off and started monitoring him. We were actually taking him into a new pediatrician that day for his 9 month check-up. I called them and they said just to monitor him, but not to give benadryl since he was under a year old. The welts started to go away within half an hour and it was time for a nap, so I decided to lay him down. I got him to sleep and sat down right next to him and pulled out my phone so that I could browse my phone while keeping an eye on him as he slept. About 5 minutes into his nap, he vomited all over his bed. I picked him up and he vomited again. I called the doctor back and she said that since he vomited them up, he was probably fine. I now know that this is the most ridiculous piece of advice to give about someone having an allergic reaction to food and absolutely FALSE. What he had would be considered anaphylaxis by some allergists since he had 2 different systemic reactions (hives + vomiting), and would maybe even warrant the use of an epi-pen.
Luckily, he was fine. He didn’t throw up again and his welts went away. He tested positive for egg allergy via RAST blood testing that day, but negative for dairy, even though I had suspected dairy to be positive. After his 1 year well visit, we were sent to an allergist. The allergist did skin testing and my son tested negative for dairy (again) and positive for egg. Even with two negative dairy results, my gut believed differently. As an infant he was incredibly intolerant to any dairy he received through my breastmilk. I could eat the tiniest bit of dairy and he would be up writhing in pain. Everyone, and I mean everyone, would say “Oh, I’m sure it’s just an intolerance he’ll outgrow it by the time he’s on solids”. What I wouldn’t give for that to be the case. At his one year wellness visit, the pediatrician told me to start trying milk, cheese, yogurt, etc. I said that I didn’t want to because I knew in my gut he was allergic. She persisted, and so we tried a TINY piece of feta, like literally one crumb, and he broke out in hives around his mouth. A few days later, we tired maybe 1/8th of a bite of yogurt and this time my son started batting at his tongue as if it was itching him or hurting him, and again broke out in hives around his mouth. I gave benadryl and no other reactions occurred. I told this to my pediatrician and she still wanted me to try milk. She claimed that he just had sensitive skin. My gut knew better and I didn’t do it. We started giving him coconut milk in addition to my breastmilk, instead. We tested his blood again at 18 months, and what do you know, it came back positive for a dairy allergy.
Other than the crumb of feta and 1/8th of a bite of yogurt, my son has never had any foods containing dairy at all. Scratch that, he did have a few syringes of formula in the hospital on day 1 and 2 of his life, before I knew they were giving it to him. He has also gotten welts around his face when he ate soy sauce, so we avoid soy completely as well, even though his blood test came back negative for soy allergy too. We haven’t tried any nuts whatsoever because our allergist suggested that we wait until he is old enough to tell us if he is having any symptoms (itchiness, stomach ache, difficulty breathing, throat swelling, etc). Again, my pediatrician disagrees and thinks it’s ridiculous that we don’t give peanut butter. At his 2 year check-up she said that he would be able to communicate well enough if he was having a reaction. Complete BS if you ask me. There is no way he would be able to tell me that his throat was itchy or he was having trouble breathing.
My son goes to a new allergist tomorrow, one that I am so excited about as he is one of the few nationally that practices OIT (Oral Immunotherapy Treatment). OIT is a glimmer of hope for those with food allergies. Basically it’s a treatment that helps your body to build a tolerance to the offending food slowly over time. It can’t be done until you are around 5 years old, though…and it’s only done on a few foods at this moment (I think mainly nuts, dairy, and eggs). Basically, they give you a minuscule amount of your allergic food, and then you consume that same amount every day. The dose is gradually increased until you reach maintenance. At that point you have to eat a specified amount of your allergen every single day.
Dealing with my son’s food allergies have not been easy, in fact it flat out sucks. I have days where I am SO incredibly angry about it, that I don’t even know how to manage my anger. I’ve cried when the ice cream truck goes by, and I’ve cried at cheese commercials. I’ve cried when a friend talked about her son attending a pizza party at school. And recently, I’ve been crying seeing all of the pictures on my facebook of kids going off for their first day of school. I get so jealous, angry, sad, heartbroken when I see stuff like this because these parents/people have absolutely no idea what it’s like to walk a day in my shoes. My son can’t eat anything without me scouring the ingredients once, twice, even three times to make sure there’s nothing he’s allergic to hidden inside. And it’s not so simple as looking for “milk” because things like caramel coloring can be a hidden form of dairy, among many other completely random and hard to pronounce ingredients. And if you haven’t realized it already, dairy is seriously in everything. And soy is in quite a bit, too. We make a lot of fresh foods around here. But, what this means is that my son can’t eat out at restaurants. Period. At least not yet, maybe not ever. I find myself in shock when I see moms at restaurants feeding their kids food off the menu, and then I realize…oh yeah they don’t deal with food allergies. But, we have to be careful. There was a girl that died after eating french fries during her school lunch. Those french fries were double checked to be clear of her allergenic foods. Turns out, the tongs that were used on the fries had previously touched poutine, and the little girl died of a small amount of cross contamination from the cheese in the poutine. She was allergic to dairy.
I find myself thinking about things YEARS down the line. My son will never be able to go to sleep away camp, it’s too big of a risk. Unless we can find one specifically for kids with food allergies. And what happens when he starts getting interested in kissing? What if the person he goes to kiss just drank a glass of milk? I will always have to talk with his friends and their parents to explain the importance of his food allergies. I will have to sit down with his teachers, school principal, school nurse, etc and create a 504 plan for him. I will need to advocate for classrooms to be free of his allergens, unless we decide to homeschool. It’s so hard because I am an introvert. I’m shy. I don’t like confrontation. But, I have to be his advocate because if my husband and I aren’t, who will be? He has life threatening food allergies, and I NEED everyone to understand that. He won’t just get a tummy ache if he drinks a glass of milk. He could die. And he could die within 20 minutes.
Playdates have gotten really hard for me. When he was little, it didn’t matter because everyone was either breastfed or bottlefed in arms! The kids couldn’t run around, they pretty much just sat there, maybe crawled a little, but it was no big deal. Now, anywhere we go there are kids running around with food and cups of milk. My son isn’t old enough to understand that he has a food allergy, so if I don’t watch him like a hawk, he could get his hands on something that could really harm him. His allergies have always caused me anxiety, but recently after two incidents, it’s gotten worse.
The first incident was when we were attending the last of a series of Music Together classes. (By the way, if you don’t know about Music Together you should check it out, it’s awesome.) The teacher brought in some donut holes for the kids to enjoy since it was the last class. I didn’t know she was doing this, or I would have been prepared with something special in my bag for my son. I wasn’t, and when he saw that everyone was getting a treat, he got really upset and didn’t understand why he couldn’t have one. I rushed him out of there, but we left with him crying. He got over it quickly, but when I got into my car, I cried.
Then, this week we had another incident, expect this one was scary. Our house is mostly egg and dairy free. I still avoid it since I’m still breastfeeding him 3 times a day, but my husband likes to have icecream and cheese every now and then. Yogurt, too. We stopped buying regular milk a while back because I was afraid that some morning we would be so tired we’d accidentally give my son cow’s milk instead of his usual coconut milk with his cereal. Anyway, so my husband finished a carton of icecream last Sunday night and set it in the sink. Monday morning, I rinsed it out and placed it in the trash. I pushed it far down and bottom up just in case my son opened the trash can to peer in like I know he sometimes likes to do when I’m not watching. Sure enough, while I was preparing breakfast, he opened the lid and I asked him to close it. I’m not sure if he touched the ice cream carton or not, but while we were eating breakfast he had a reaction. He got hives around his mouth and his left eye became bright red and he was rubbing it profusely. If the hives had spread, or if he had shown any swelling, or vomiting/diarrhea, I would have given the epi pen. Instead, I watched and saw that they weren’t getting worse. They got better and went away after about 45 minutes. The only theory I can come up with is that he touched the outside of the ice cream carton which had dairy residue, and then when he went to eat his blueberries, he put his hands in his mouth which caused the reaction.
You wouldn’t think that such a small contact with an allergen could cause an allergic reaction, but it can. I didn’t think my son was that sensitive, but now I know that he is. We are now removing any and all forms of dairy and egg from our house, even those things with trace amounts. It’s not worth the risk. This needs to be his safe place, and we need to know that if he has a reaction here, it’s either due to something environmental or a new food allergy. I belong to a couple of groups on facebook with other parents of kids with food allergies, and it’s not uncommon for a kid to be this sensitive to dairy. Kids have even gone into anaphylaxis from just touching dairy residue. Scary, right? It’s not just peanuts, y’all.
Well of course, my anxiety and stress is now at an all-time high. I’m scared to leave him! Every time I look at him, I’m searching for any signs of an allergy. I find myself starting at his face and body all the time looking for welts, that I’m forgetting to look him in the eyes and just enjoy my time with him. It’s not fun. Going out in public to people’s houses and parks sometimes seems like a toxic death trap in my mind. Watching someone drink a glass of milk makes my heart race. Watching someone eat chips covered in cheese as the crumbs fall to the couch, while they try to carry on a conversation with me, makes me start to sweat. What if my son crawls on the couch and gets the crumbs on his hand, then sticks his hand in his mouth? I’ve been to friends houses for play dates and once spotted a lone cheeto hiding in the corner on the floor. If I hadn’t noticed it, my son may have picked it up and popped it in his mouth. I now wipe down every cart at the grocery store, scour ingredients of everything we buy, call manufacturers to see if the item is produced on shared equipment with dairy, and cross my fingers and hold my breath each time we introduce something new. This is my daily life.
I’m not a confident person and I’ve always been one to hide or mask my feelings. I have to step out of my comfort zone now, I have to do it for my son. In the past, if something bothered me, I just let it go. But now, I have to speak up. I did it today, for the first time, and I’ll admit that I thought I was going to being judged. I wasn’t, and the woman was so respectful, but it was incredibly hard for me. I took my son to an indoor play place where food isn’t allowed. It’s an amazing facility with all wood toys, etc. I brought him in and one of the kids was standing in the doorway eating what looked like a cookie. I asked the owner if that was her son, and indeed it was. I explained my son’s food allergies and she said that they were actually dried peaches (phew), and that she was having him eat in the doorway since food wasn’t allowed. I apologized, even though I knew I shouldn’t, and she said that she totally understood. It was so hard for me, but I was proud of myself for speaking up. Even so, my anxiety raced because you never know if a kid just drank a big sippy cup of milk, and then ran into the room and touched the toys. Milk allergens (and other food allergens like peanut, etc) remain where they’re at until they’re wiped up. They don’t just disappear with time. We stayed for an hour and a half though, with no incident, and I was proud of myself for the successful outing. It was amazing to see how happy my son was to be there, playing with the other kids.
I love that it seems like the awareness of food allergies is starting to increase. Stories are making the news and people are starting to realize just how serious they can be. And not just nuts. I’ve been wanting to write this post for a while (I’ve written it a million times over in my head), but this article I saw today is what got me to sit down and write during my son’s nap. The story is incredibly unfortunate, and incredibly sad, but it brings to light some great thoughts about food allergies and revisiting our protocols when presented with the possibility of exposure.
Honestly, I hate it. I HATE that my son has food allergies. I hate that so many others have kids with food allergies, too. It’s not fair. It’s not fair when I drive by an ice cream shop and see the line out the door with kids of all ages so excited to get an ice cream cone. It’s not fair that kids with peanut allergies either can’t fly or have to go to extreme caution (notifying the carrier, ensuring no peanuts are served and no one eats any products with peanuts, covering their seat with a fitted sheet, bringing 6+ epi pens on board) when they want to travel. It’s not fair that these kids have so many joys taken away from them that other kids and their parents take for granted. I’m not mad at families of those without food allergic children, but I am definitely envious. I wish we could take my son to get an ice cream cone. I wish we could go out to eat without me worrying about contamination from the table or high chair. I wish I didn’t have to worry every time someone touched my son or gave him a kiss – thinking about what they ate that day that could still be lingering on their hands or mouth. I wish every tiny red spot on my son’s body didn’t make my heart race. I wish we could live just one day care-free, and go to the zoo and let my son run around without the slightest thought of a possible allergic reaction…where my biggest worries would be hoping my son didn’t fall and get a boo-boo and making sure I remembered to apply sunscreen. Speaking of sunscreen…food isn’t the only thing we have to look out for. We have to check ingredients in soap, lotions, shampoos, toothpaste, sunscreens, chapstick, and pretty much anything that is put on the skin or in the mouth.
I hope so badly that there will be a cure one day. I also hope that my son outgrows his allergies, SO so badly. He has a small chance of outgrowing them by the time he is 5. But, for now, I know what I need to do. I need to accept that this is our life. I need to not be offended when others say things like “Can’t he just eat one french fry?”, or “Aren’t peanuts the only food with a serious allergic reaction?” or “I’m sure he’ll outgrow it” or “Well, you have an epi-pen, so you’ll just use that if need be.” or “Aren’t you overreacting a bit?” I have to tell myself that they mean well…which is tough because really, I just want to slap them. But, instead of succumbing to the anger inside of me, I need to work on spreading awareness and education. I need to be my son’s advocate and stick up for him when we are out and about. Some days are harder than others. Some days I’m angry, some days I’m sad, but I know that with time, those days will grow to be fewer and farther between.
My husband and I are his only protection right now, until my son can understand what having food allergies means. I have to be strong and confident and always prepared. Most of all, I want to make sure that he doesn’t feel my anxiety towards his allergies. I want him to learn the importance of never eating his allergenic foods, but I don’t want him to feel a diminished quality of life. He’s a happy, healthy boy and we want to keep it that way. I’m a food allergy mom and I’ll do what it takes to be a darn good one!August 26, 2013
This entry was posted in baby, Food Allergies. Bookmark the permalink.