As with many issues that people may not deal with, food allergies can be viewed as a simple diagnosis and treatment. For those of us who have children with food allergies, it is far from simple. I repeat, it is not simple. There are many aspects to consider: testing for all possible allergens (food and environmental), changing diets, changing routines, educating others, constant preparation, hawk-like observation of all events and outings, managing doctor’s appointments and medication costs…..The list goes on. Even though we’ve been dealing with food allergies for almost two years, I know I cannot finish the list as everyday presents a new obstacle to add to the depth of the issue.
As an example, I suggest you take note of the fact that the two mothers running this blog have not had time to update lately. The reason being, so many issues going on in life that we barely have time to hold ourselves together, let alone share it with the world. But today, I need to release some of the anxiety smothering me. Hope knows what I mean, as do many food allergy moms and dads (and parents of children with other medical issues).
My most recent issue started last Monday as we were traveling from NC to GA. We had a relaxing and much needed weekend visit with my family. As always, I kept a close eye on my son, DR’s diet. Since my grandparents do not have sunbutter (our favorite peanut butter alternative), DR ate almond butter and jelly sandwiches. My grandpa who is on a special diet still had to eat some peanut butter sandwiches during the day, but we took big precautions, and DR was able to avoid any contact.
Twelve hours after we returned home, DR had a small rash developing on his legs and belly. We rubbed him down with his topical steroids like normal, and in the morning he was looking much better. Then it happened. Daycare called and he was covered head-to-foot in hives. We followed our protocol for this type of reaction by dosing him with oral antihistamines and topical steroids, covering him in clothing to keep him from clawing his skin off, and watching him like a hawk praying for the best, but expecting the worst. The next morning he seemed better. The next 9 days included a cruel repeat of the events three more times.
The second event was after dinner at my mother-in-law’s house. This time it started on his legs and arms. He screamed in pain at the itching in his legs. We repeated our protocol, and I slept (laid awake and stared at him) in bed with him that night. When our power went out due to thunderstorms, I just surrounded the bed in flashlights. As I laid awake, I went over the possible triggers. He was nowhere near peanuts or eggs, but he did have exposure at least two times to almonds. Maybe that was the cause.
The third event occurred two days later at daycare right after naptime. This time it started in his arms. He had only eaten the food we had supplied for him, food that he had eaten before. My sister-in-law drove to daycare and gave him his prescription meds. My husband picked him up early from daycare, and by the time I got home at 6:30, he was out. This boy, who normally only sleeps for 8 to 9 hours, was out until 7am this morning (minus a delirious 4am sleepwalking/talking event). At this point, I had hoped that he was just experiencing a biphasic reaction from the second event.
Then came the fourth event today, just one day after the third. He had not had lunch yet and his class had only been outside for 3 minutes. He immediately started turning red and the hives appeared. The daycare reacted by giving him the prescription meds (which are now in the directors desk) and calling me.
I know many people will read this and think, why doesn’t she call the doctor. That is a story in itself. He was already scheduled with his allergist sometime late-August. At his first reaction, I called and asked to move the appointment up; unfortunately, his doctor is on vacation until the first week of August, and they couldn’t test for anything anyway until he has been free of antihistamines for a week. So we scheduled him for August 5th. After the second reaction I called, but nothing could be changed. The day of the third reaction, I called his pediatrician’s office. For some reason, all of the doctor’s are out of the office (is July doctor vacation month???) and they scheduled him an appointment with a Nurse Practitioner who told me she was uncomfortable seeing for him an issue like this and thought he should see an allergist (well, duh!). So with his fourth reaction today, I called the allergist office and demanded he be seen by a different doctor. We now have an appointment for tomorrow afternoon and wonder if they will be able to do anything to help him.
Throughout all of this, I also have to coordinate and care for everyday issues: our 1 year old is teething, previous doctor bills are due, work schedules, vacation schedules, bosses who get mad for you changing the work schedule, family visits, household chores, other doctor appointments, meal planning, not crying in public when I see the daycare’s phone number, only to name a few.
And emotionally, I feel like I’m being buried further and further from a solution, from peace-of-mind, from sanity. But I have to hide it, because if I break down, who will handle this? My husband probably, but he’s currently dealing with same stressors and more. So if you ever think that food allergy parents are overly-dramatic, overly-sensitive, or overly-complicate situations, first think about with which we deal. Your judgement only adds to the depth of our problems, but your support (especially the emotional support) can help digs us out of the pits of despair.