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

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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

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

 

10 phrases allergy moms “love” to hear

  1. How allergic is your child?  When I tell someone my child has a food allergy, I’m telling them so that my child can avoid the allergen.  It doesn’t matter “how” allergic he is.  He doesn’t need the food, and we don’t need the agony of an allergic reaction.
  2. Is he really allergic or do you just not want him to have sweets? Of course I don’t want to constantly shove sweets down my child’s throat, but just because he can’t have certain foods does not mean I don’t let him have sweets.  Besides, why would you ask a mother (whether or not she has a child with food allergies) if you can give her child sweets?  Why can’t you offer my child an apple or even better a non-food item like stickers?
  3. I feel bad that he can’t have the same food as other kids.  I don’t want him to feel left out.  Most moms of children with food allergies come prepared with alternative options for their children.  While the children may feel a little left out from not getting to eat certain foods it is far better than the alternative of them eating the foods and having a reaction.
  4. Ugh…my life is so inconvenienced by your child’s food allergy.  Why do daycares, schools, airplanes and public buildings have to be peanut free?  First, if you seriously can’t wait until you get home to eat your peanut items, then maybe you have a bit of an issue?  Second, the severity of some allergies like peanuts differ from person to person.  Some people react just by touching an item that someone who had peanuts earlier touched.  It’s like with the flu.  If you have the flu virus you shouldn’t be bringing it out into public where it can hurt others.  Just keep your peanuts and your flu at home and to yourself.
  5. How long has it been since your child has tried this food? Maybe he’s built up a tolerance.  Yes, some people may grow out of their food allergies, but some of them may get worse.  Currently, there is no way to know either way.   There are some research efforts underway to see if there is a cure for food allergies.  No, we will not test his tolerance right now in a non-medical environment without his doctor’s consent just because you want to see if he reacts.  I can tell you that I am probably losing my tolerance for you.
  6. You must have eaten too much of that food during your pregnancy or while you were breastfeeding! You must be ignorant. Thank you for blaming me for my child’s medical condition though. Bless your heart. Do your own research and know that we blame ourselves enough for our children’s reactions without others trying to blame us too.
  7. Giving them a little bite won’t hurt. Right, and neither will letting them hold a rattlesnake. To allergy moms those two things are equal. Both could kill our child. Let me say that again to make it clear: ONE BITE COULD KILL MY CHILD. I’m not willing to take that chance. You shouldn’t be either. Killing people is frowned upon last time I checked.
  8. Oh, they’ll grow out of it. We actually want this. We desperately want our child to grow out of their food allergies. For them and for us. Unfortunately we don’t know if that will happen. Neither does my child’s allergist. I’m so glad you know though.
  9. It was processed in a plant/on a conveyor belt/on a counter top with the allergen, but it doesn’t have the allergen in it.  It should be safe. If it wasn’t potentially dangerous, then why do the products have to tell you they were processed near the allergen?  What if your favorite food item said processed by someone who had the flu or TB?  Would you feel comfortable chancing contamination?
  10. This one we will never hear said to our face. We’ve heard others say it about other allergy moms when they don’t realize we are listening or don’t realize we are also allergy moms. They’re just doing it for attention, I doubt their child even HAS a food allergy. Don’t be this person. This person is not a nice person to be. Please know that we are not seeking attention. Most of us HATE having to ask what ingredients are in everything when we are at a restaurant, a person’s house, on vacation, etc. I don’t like inconveniencing people. I hate it. I’m a southern girl to my core and I love making people feel at ease. I’m way out of my comfort zone when I have to seek people out to ask questions. I will do it for my child’s safety EVERY SINGLE TIME no matter how uncomfortable it makes me. I can assure you if I could take it away from them I would in a heartbeat.

This post is not intended for people who genuinely care about our children’s safety. If you are asking us questions that are intended to really help our child or if you are wanting to know details so that you can make them or give them a safe treat we welcome that. We always know your intentions as soon as you speak though. We can tell when you are a caring person and when you’re just trying to be a busybody or a tush.

~Hope & Lacey~

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Before and After

Food allergies are life altering.  I should know as I developed an allergy to tree nuts as a teenager.  I have had many types of reactions from rashes/hives, upset stomach, swollen body parts, and the dreaded anaphylaxis requiring epi-pen injection, an ambulance ride, and a visit to the ER.  This post isn’t about my allergies, though.  It is about my son’s.

I only mention my own brief history to point out that this wasn’t always the norm.  Just like with my son DR, we had a period where food allergies did not affect us, were non-existent.

I hated to cook, and my husband, Justin, worked long sporadic hours, so it was easy to just order out:  our options only limited by who was open or willing to deliver.  I complained when we couldn’t agree on food or when an item I wanted was out.

Our diets were that of the typical American.  I never looked at fat, triglyceride, sugar, or caloric values.  Ingredients (other than my tree-nut avoidance) didn’t matter as long as we enjoyed the flavor.  We did try to adhere to a healthy diet for DR, attempting to avoid sugary foods and things that could rot his teeth or lead to obesity.  Grandparents would call us uptight for limiting him to only three cookies or bags of gummies.

Holidays and family get-togethers were plagued with vast amounts of foods. Christmas was my favorite time of year.   From Thanksgiving to New Year’s Day, we ate until we were sick.  My grandmother’s holiday baking was beyond compare.  Homemade cheesecakes, reese cups, cookies, brownies, fudge, and puff balls (different types of snack mixes dipped in melted chocolate, caramel, and peanut butter.  She would call me weeks in advance to ask what my heart desired and would spend hours baking.

I look back on all of this now with mixed emotions: sadness, frustration, acceptance, relief…the list goes on.  Our life is completely different, our food choices carefully examined and deliberated.  We eat out very little and cook much more.  Processed foods are a thing of the past, and fresh ingredients line our cabinets and refrigerator.  Holidays are a nightmare, and I am now a baker.

~ Lacey