The Depth of Food Allergies

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.

~ Lacey

https://fromsouptonutsallergyfree.wordpress.com/2016/07/20/the-depth-of-food-allergies

The 5 stages of food allergy grief: a child’s emotional reaction

DR was originally diagnosed with an egg allergy at 18 months old, at which time it was easier to limit his exposure as he only ate what we gave him.  A couple months after his 2nd birthday, we discovered his peanut allergy.  It was a little more difficult to avoid this allergen as peanut butter was one of his favorite foods.  We quickly replaced all of the peanut products in our house and finally found a suitable alternative to peanut butter.  Now that he is older and is learning to eat things for pleasure/taste he starting to go through his own stages of food allergy grief, making the exposure more difficult to avoid.  As a parent, only able to watch from the sidelines, his reactions can either add to the stress or help with the overall learning process.

Denial:  To keep him from feeling left out or isolated from other children, we tried to find as many alternatives to normal foods that looked or tasted similar.  For a while, we thought we had it made.  However, in the instances that we cannot predict when food will be brought to school for surprise parties, special events, or impromptu outings, it is difficult to have equivalent alternatives.  For example, one day last week, a child in DR’s class had a birthday.  Up to this point, no parents had brought in treats for other birthdays.  On this particular day, the other child’s parents decided to bring in special cookies.  Of course DR could not have one.  The cookies looked just like allergy-free cookies I had made before, so he could not understand why he couldn’t have them.  This led to a meltdown.  At 3 years old, he cannot understand why some items have eggs and others do not, and while I try to explain it to him, I am at a loss right now.

Anger:  Before his first reaction to peanuts I would allow DR to pick out a candy treat when he was good in the grocery store.  Due to having to read all ingredients for his egg allergy, grocery trips could be 2-3 hours and his compliance was key.  After his peanut allergy was discovered, this reward system disappeared.  Even though I offered him other rewards like stickers or books, he still wanted his candy.  One day, as we were checking out after a long grocery trip, he grabbed some candy off the shelf (of course it had to be Reese Cups), and tried to open them with his teeth.  As I wrestled them away from him, he was screaming and crying angrily at me, “I WANT THEM!!!”  I tried to explain from the store to the car, on the ride home, and even after carrying all the groceries into our kitchen, but his poor little 2 year old mind could not understand why this had changed.  He was used to not getting his candy when he misbehaved, but he had been perfect during this trip (except for the angry tantrum).  Since then, I try to avoid food as a reward, giving him other options at the beginning of our trips, so food is not an option in the end. 

Bargaining:  Bargaining has a very literal meaning here.  Despite all of my preparation,  extra snacks, and explanations to DR and others, I still have to keep a close eye on DR as he eats.  I have caught him in many instances swapping food with other kids, sharing his special snacks.  When he realizes he is caught, he claims that he is sharing. I have to start my explanations all over again.  Then there are the times he sneaks foods that he KNOWS he cannot have.   A couple weeks ago, we caught him eating his dad, Justin’s donuts.  As we panicked looking for the first sign of a reaction, DR kept saying “I fine.  I not itchy.”  Unfortunately, within minutes the rash started, and again we had to explain the dangers to him. 

Depression:  Halloween was a rough time for us this past year. I was extremely vigilant in keeping him away from candies.  I purchased allergy-free snacks to switch out when he went trick-or-treating.  I donated allergy-free options to local trunk-or-treats.  I literally prepared a month in advanced for this event.  In our town, Halloween and Fall festivals spanned several weeks, so we had a good pattern going.  Unfortunately, by the time Halloween actually arrived, DR was so burnt out from all of our special treats, activities, and precautions that he didn’t want to go trick-or-treating.  It was then that I learned that there should be limits to how concerned or scared we adults appear to children with allergies.  He was beginning to mimic my depression, and this was what I had been hoping to avoid

Acceptance:  I am amazed at how quickly DR can grasp this concept.  I think because his allergies developed at such a young age, we are avoiding some of the worse emotional reactions.  I love that at 3 years old he asks if food that is presented to him has eggs or peanuts.  And most of the time he loves his special foods.  I wish that my own acceptance of the issue could come as easily.

I am very much aware that as he ages DR will repeat the cycle of food-allergy grief, but I feel hopeful that he remain the spunky, wild, vivacious boy that I love.

~Lacey

 

 

 

All it takes is one

One call, one email, one concerned parent, that’s all it takes to affect change for those with food allergies.

About a month ago, I sent an email in to the Tybee Island City Council expressing my concern for the fact that people carelessly discard food items like peanut shells on the beach.  I never expected the quick responses I have received.

Despite the fact that food items like peanut shells are biodegradable, discarding them in the sand is still considered litter.  By pointing out how dangerous food items can be for those with food allergies, we have given the local police force a new angle when approaching beach-goers who litter.

To get the word out, Tybee Island City Council has suggested developing a PSA to be aired on their government television channel and possibly other local news channels.  This is the exciting piece.  The daunting, more nerve-wrecking piece is the fact that we will probably need to raise funds in order to make this a reality.  We are talking about $5000.

So this mom has started looking at fundraising ideas, reaching out to other local moms, and is hoping that I can turn the concerns of one mom into the action of many moms.  Stay tuned for our  journey.

~Lacey