The faint cries gradually become louder as I realize that they aren’t coming from that neglecting mother’s cart at the grocery store… they’re coming from my son’s room. It’s three o’clock in the morning and I am again ripped out of REM sleep for the third night in a row to attend to my nine month old who is screaming in pain but can’t tell me why or where.
Pain killer barely takes the edge off and I pace the floor with a screaming and restless child in my arms, still half asleep myself. Any attempts to move to the rocking chair are met with louder cries. Somehow I force myself to stay on my feet for another hour, still trying to wake from this nightmare I’m in.
We’ve been doing this routine three to five nights a week for the past three months and there’s still no sign of teeth. This can’t be teething, but multiple trips to the pediatrician’s office have only created more doctor’s bills and no signs of any other possible causes of this pain. I find myself sometimes even wondering if it’s still real.
He’s acting like his ears are hurting. The pressure seems greater when he is laying down, but the doctor says his ears look fine. Could it be reflux? No. The symptoms don’t add up and elevating his head never seems to help.
He’s fussy during the day too and refuses almost every bite of food I put in front of him, yet I know he is hungry. He’s started to drop off of his growth curve and I can tell the doctor is starting to get concerned.
The next day my son is more fussy than usual after just going down for his afternoon nap. I go to check on him to find that he is rubbing at a swollen eye, his lip also swelling on the opposite side of his face. We had already been suspicious of seasonal allergies and I happen to have a daily antihistamine on hand that had been recommended to me by a pharmacist when I inquired about the “six and up” label on the Benadryl that an on-call pediatrician had recommended. Finding myself wishing I had purchased the Benadryl instead, I quickly give the recommended dose of antihistamine, snap a picture with my phone, and call our usual pediatrician’s office.
During the phone conversation with the nurse the swelling goes down and my son begins settling into his nap. The nurse tells me to write down a list of foods he ate for lunch that day and continue watching for patterns. I write down every food, completely forgetting about the sample of nutty bread he had a taste of during lunch (he hadn’t eaten any nuts, just the bread that surrounded them). Nuts don’t make it on my list that day — I don’t even give them a second thought. How am I to know that tree nuts are a common allergen anyway?
The doctor’s office doesn’t make any connection with this experience and his nightly mystery pain episodes. My brain is too foggy from lack of sleep and I don’t make the connection either.
The pattern of pain-filled sleepless nights continues another month until my son’s ears rupture while on a family campout in the mountains. Tears of pain and frustration are all I can express as I hold my screaming baby (again, in the middle of the night) for a solid 2 hours… refusing to nurse or take a binky and painkiller seeming to have no effect on him.
Though a painful experience, this ear infection leads us to a specialist who very quickly diagnoses his mystery pain: food allergies. It makes perfect sense to me and I immediately eliminate some suspect foods from our diet with noticeable improvement.
For the next several months my son and I eliminate foods from our diets for weeks at a time, trying to discover exactly which foods are the biggest culprits. Now each meal requires hours of research, planning, shopping, and preparation. While eating one meal, we are already planning and preparing for the next. Grocery store visits are a minimum two-hour ordeal as we scour food labels, trying to decipher what each ingredient is and where it came from. Just as we start getting the hang of which grocery items are safe and which aren’t, symptoms return and we determine that even more foods need to be eliminated from our diets. We feel like we are starting over again as we return to researching meals and cooking methods, spend countless hours reading labels at the grocery store, and even more hours in the kitchen.
A second, more serious allergic reaction almost sends us to the emergency room late in the evening on Thanksgiving Day. This time we did have Benadryl, though while following up with the doctor later we learn that Benadryl would not have saved our son’s life had he been experiencing true anaphylaxis. We leave the doctor’s office with a prescription for life-saving emergency medication and orders for a blood test.
Several hundred dollars later we have a life-saving medication in hand. It must remain at room temperature and travel with us wherever we go, regardless of whether or not we plan to eat any food while we are out. We carry it with us knowing we most likely (hopefully) won’t even use it before it expires and we need to spend the money all over again to get a new one next year…. and every year for the rest of our son’s life. If we do ever have to use it, we’ll need to be prepared to make the decision quickly to stab a needle into our son’s leg — the only way currently available to administer this life-saving medication. One day, while still a young child, he will need to be brave enough to learn how to administer this medication to himself.
When the blood test results come in, many of our suspicions about food are confirmed. We also learn that a few of the foods we are still feeding him on a regular basis may be causing some of the lingering symptoms. More changes to our diet incur and the cycle of research, long grocery store trips, and extra time in the kitchen repeats itself. Finally, we experience an entire week free from food allergy symptoms and sleeping through the night. We praise God for this miracle and put together a plan to strictly avoid all foods to which our son is allergic. All of these foods (not just those which are life-threatening) are strictly avoided and we gradually begin to settle into predictable patterns and a maintainable lifestyle.
We watch as his babysitters and other temporary caregivers sigh in frustration and roll their eyes while asking for clarification… “Which foods are the most serious?” they ask as we interpret that to mean “Which foods do I need to make sure he stays away from and which can I be more casual about?” We know they are overwhelmed with our son’s special needs and we do our best to help by sending him with his own meals and snacks from home and asking these caregivers to simply make sure he doesn’t eat or touch any of the other kids’ food. To us, all of our son’s food allergies are serious. We are tired and weary from being up in the night and feel for our poor child who desperately needs a long break from the pain he has experienced for so long.
Still, despite our best efforts, it takes practice on our part and a few more painful experiences for our child and the rest of the family before we learn to watch for cross-contamination labels, wash hands, think before kissing, and keep our son truly free from his allergens.
We also work constantly to be prepared with food in every situation so our son does not go hungry. We learn to prepare bready foods and desserts on a regular basis and keep them on hand in the freezer so they are ready at a moment’s notice. We also learn the value of saving leftovers for future lunches to give our son more options and variety.
Eventually, we get the hang of our new lifestyle though it will never be the same as before. We can never again afford to be caught unprepared. Careful, advance planning doesn’t just make our life easier — it is a necessity.
We can’t be shy at social gatherings either. Calling in advance, bringing comparable food, and as our son grows older, having special, similar treats on hand to offer when all the other kids are getting one too, will always be a priority for us.
Still, there will be much we can’t control. Playgrounds, shopping carts, public eating areas and picnic tables all may be contaminated with traces of our son’s life-threatening food allergy. We’ll always need to be prepared to appropriately clean surfaces before our son touches them. But what about when he is out playing on the playground with other kids who are there on picnics with their own peanut butter and jelly sandwiches that they eat only a few bites of at a time and run back out to the playground with unwashed hands? How do we control the social event where everyone in the room is eating our son’s life-threatening food allergens, potentially dropping crumbs for our exploratory toddler to pick up and put in his mouth?
Sending him to school when he is old enough will be full of the usual fears of any mother, with added questions like “Will this be the day he experiences a reaction I cannot be there to save him from? Will he (or his teachers) be able to do what is necessary to save his life?”
Despite these fears, there are risks we will still decide to take. Why? Because we are still a part of this world. In a sea of uncertainty, we will continue to seek for normalcy. Normalcy, so our son can go to birthday parties and school. Normalcy, so our son can play sports and go on scout campouts and live a normal, everyday life. Normalcy, so our son can grow to capitalize on all the opportunities that would have been available to him otherwise.
Many hours spent nursing my food allergic child give me time to ponder these situations. I have decided to continue nursing for another year, as recommended by the doctor and I soon find the benefits of continuing to nurse while following his diet myself reach far beyond those of a nutritional nature. My heart is softened as I enjoy these special moments we share together and thank God that I am able to provide this precious milk for my baby.
As I hold my son in my arms and think about the risks and the challenges he will face in this life, I say a silent prayer for him and trust that God in heaven will watch over him where I can’t. I hug him tightly and a tear comes to my eye as I realize how, despite these challenges, I am still forever grateful… and truly honored to be called his mother.