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

Apologies and thank yous!

To the parent with the perfectly healthy child, to the parent whose child does not have food allergies, to the parent who doesn’t watch your child like a hawk before, during, and after meals, to the parent who does not have to inconvenience others because of your child’s issues:

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 APOLOGY

I am sorry that my child’s medical needs inconvenience you.  I am sorry that you are limited in your choices for your child’s lunch.  I am sorry that our school constantly sends out reminders about which foods can and cannot be brought to school.  I am sorry that you are sometimes late for work due to the long lines at drop-off in the morning due to the school-enforced rule that everyone wash their hands.  And I’m sorry that I can often sound harsh and repetitive when talking to you over and over about my child’s allergies, the dangers surrounding him daily, and my expectations of you as a fellow parent.  I know you are bombarded with demands from your life.  I know that you may have your own unknown issues going on.  I know life may be difficult for you because of other issues, and I’m sorry.

I will continue to be an advocate for my child, working to bring awareness to this issue in order to protect him and many others facing this scary issue; however, I promise to work on my delivery.  I promise to respect your feelings and come at you in a better way than my renowned attack-dog-like method.  I ask for your respect and understanding as well and hope that we can find a way to collaborate and find a solution that works for everyone.

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THANK YOU

Thank you for checking in on me after my son’s hive breakout.  Thank you for the prayers sent our way each day.  Thank you for your quick actions when he reacts while in your care.  Thank you for calling/texting to ask what you can fix or bring to a party or class event.  Thank you for noticing the difficulties that come with having a child with food allergies even though your child does not.  Thank you for teaching your child kindness and respect when dealing with my child’s allergy.

While there are many out there who complain and criticize our situation, you are there, supporting us, reminding us that there are still kind people in the world.  You encourage us not to bubble our child up and never let him out of the house, out of our sight.  You make my children and me feel welcome in your home. You give me hope for our lives.  I know because of people like you we can survive food allergies, cope with them, and hopefully one day over come them.

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~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

“D”

imageAfter Z grew out of his milk protein allergy and his allergy induced asthma we put him on lactose free milk to keep his digestion running smooth. We thought that things were FINALLY normal for us!!! After four years of craziness our lives calmed down for the most part. We still have to keep him away from horses and cats but he’s totally normal now.
During this calm normal food period my kids enjoyed peanut butter and jelly for lunch often without a single thought. We enjoyed eggs for breakfast and sometimes for a quick dinner when my husband was working. I baked with eggs every single day. I have always loved to bake. I still love it!
I never had to put any thought into what I was feeding them other than making sure they had proper nutrition. I’m a meal planner, it saves my family a lot of money and aside from making the menu itself and cooking the food that was all that I had to do. Yes, it was a pretty big job for me as a ( then ) mom of three but it was enjoyable. Then I had “D” right before MB turned 2. His birth was scary. He had distress towards the end and the doctors thought he had swallowed some meconium. We had to wait on a team of specialists only to have them walk out the door as soon as they heard the very loud cry he was belting out of his perfectly clear lungs. Up to that point all of my labors and deliveries were very nice experiences with only one small cord issue during Z’s delivery. After he came his life was simple and sweet. We enjoyed having our wild and stubborn little man! I waited until after he was one to feed him any nut or egg products and after he had them he was fine. No issues! Then one day when he was about 15 months old during a snacky lunch when we had veggies, nuts and popcorn, D started breaking out in hives. At this point aside from my own grape allergy as a kid I had never dealt with a food causing this type of reaction. I did know what it was right away because of Z’s animal allergies though, so we gave him Benadryl and he was fine. Cashews were the culprit. A few months later pecans caused another reaction. Peanuts never bothered him. So we still had peanut products in the house. His allergy to tree nuts is a hives only reaction at this point but we always stay away from them to be safe. When D was 8 months old we found out we were expecting baby number 5!!! She was born when D was 17months old. She is our whirlwind baby. With her, things have always been crazy, scary and fast. Her story will take more than one post. MH turned 2 on the 22nd of May. Her short two years have been more eventful than most people ten times her age. She is my fighter.

~Hope