Allergic to the common cold?!?!- Part 3

In my last post (There’s something itchy going on…. – Part 2) about my son, DR’s mysterious hive reactions, we had finally got him an appointment to see someone at his allergist’s office.  It was Thursday, July 21st.  His appointment was later in the day, so I spent the morning trying to treat DR’s fourth outbreak of hives in that 10-day period, monitor for other signs of a serious reaction, and manage his paradoxical  side effects from the antihistamines I had given him.

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Doctor appointments are no fun unless you dress as a superhero.

By the time we got to the allergist’s office that morning he only had hives left on his legs.  We were brought back to a room quickly.  Within 5 minutes, in walked who I thought was the other doctor in the practice.  (Quick side noted:  days later I found out that this man was a nurse practitioner at the practice.  I normally do not have preference of being seen by an nurse practitioner or physician’s assistant, but with this particular office, I have heard some awful things about this nurse practitioner.  So when I had made the appointment, I had asked not to be seen by him, and was told we would be seen by the other doctor.) He began asking questions, not about his reactions, but about whether he had been exposed to a cold.  We did have our share of the common cold spread throughout our house, but that had been almost a month before.  I then tried to turn the topic back on our current issue of hives.  I told him everything that had happened those 10 days before the appointment.  I showed him pictures.  Unfortunately, he was so focused on this idea that my son was just having a reaction to the common cold, that he didn’t even do a full work-up.  We left with the diagnosis of a viral reaction, and directions to give him tylenol or ibuprofen if he developed a fever.  I was very confused, and friends, family, and school officials could not believe it.

Since it was Thursday, we had dinner at my mother-in-law’s house like we do every week.  I had given DR another dose of his antihistamine.  As usual, the kids would run around the house and play with the grandparents after dinner.  Then it happened, minutes after eating dinner, for the fifth time in less than two weeks, DR broke out in hives.  This time it covered his entire body.  As I sat him down to examine the hives, something new happened:  he started coughing, couldn’t catch his breath.  As his grandmother try to soothe him with water, I grabbed his Epipen and called our pediatrician’s office.  The nurse-on-call advised me to administer the Epipen and called 911.  So for the first time ever, I held my child down and jabbed the auto-injector into his leg.  He squealed and looked at me as though I had betrayed him.

The next leg of our anaphylactic journey would bring even more questions as we treated what we could, fought for a diagnosis, and made new discoveries in the crazy world of food allergies.

~Lacey

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

But how do you know?

DR has been officially diagnosed with a food allergy for about 18 months.  I still remember the appointment that day in October.  He skin was lashing out for an unknown reason, and we were excited that we might discover the reason why, hoping it was something easy and simple like changing laundry detergents.  Never did I think that day would change our lives as much as it had.

Since my teen years I have had my own experience with allergy tests.  The pricks followed by the burning and itching.  At DR’s appointment it was not clear what he was allergic to, so they began by testing for the most common allergens.  Since he was a toddler they decided it was best to prick his back.  I helped him undress and sat him in my lap, his big eyes smiling up at me, and then it began.  He tried to jump, squirm, just get away.  With each pricks he screamed.  Once the nurse was done, I let him hop down.  He backed away to the corner and did not want to be touched.  My heart was broken for him.

Sadly, the worst part was yet to come.  Since we had to wait and see what reaction (if any) he would have, he could not put his shirt on, and he most definitely could not scratch his back.  As dot after dot turned red and he tried to reach them to scratch, my heart sank even more.  Finally the nurse and doctor returned.  DR’s spots were examined.  He was diagnosed with an allergy to cats, dogs, some trees, some grasses, and then eggs.

I was speechless.  I had never heard of anyone being allergic to eggs.  Looking at the dots, I noticed that the reaction didn’t seem that bad, so with a hopeful note I asked “how bad is the allergy?”  The doctor informed me that we could not necessarily determine that by just the rash reaction.  So in order to know more, he had ordered some blood work.  Wonderful…even more sticks and holes.

We drove to the children’s lab and prepared and waited.  Finally, when we were called back, I sat him in my lap and was instructed on how to hold him best, so that his arm couldn’t move.  The nurse laid out some vials and we tightened our grip on DR.  He immediately started screaming when he was stuck.  It felt like this moment would never end.

When we were finished the nurse gave him some stickers.  I took him for lunch, emotionally drained.  Instead of taking him to daycare, I took him to a park to run around. After all he had been through that day I could not imagine hurting him even more, but as our journey continues I am learning that this is nothing compared to the pain he could later experience because of an awful reaction.

~Lacey