The beginning: a very good place to start – part 1

13658998_10153805995505292_4974060221091461732_n

It has been a while since I’ve had the opportunity to blog.  I sit down at the computer when I have a few minutes and I start to type, but I haven’t been able to make sense of the past couple of months. So I’m going to break it down into several parts to better explain and, hopefully, understand and come to terms with it myself.

My three year old, DR, has been diagnosed with both egg and peanuts allergies.  He also has some pretty severe eczema.  However, over the past year we have worked to maintain a healthy and safe environment for him, so his skin was clearing up and he hadn’t had a reaction in months.  We were going out more, had found some great sitters who understood his needs, and our daycare was on board and on top of all of his food intake while he was in their care.  We were feeling pretty good about our allergy-restricted life.

The second weekend of July, I took a trip with DR and his one-year-old brother JN from Savannah, GA to Burnsville, NC.  Because of other medical issues, it had been months since we had seen my family, and that weekend was much needed.  We enjoyed the fresh mountain air, took a dip in a local river, played outside in the breezy summer heat, and ate to our hearts content of my grandmothers amazing food.

We stuck to our food guidelines the entire time, even when my grandpa made himself a peanut butter sandwich.  He is on a diet, so peanut butter is one of the few nutritionally valuable items he can eat.  Because of this, his contact with DR was limited for about 8 hours after the sandwich, all surfaces were cleaned several times, and he ate it outside in an area where DR would/could not go.  The plate and other utensils were disposed of in a trash can outside and isolated from the rest of the house. This was two days before we left, and all seemed fine.  I had prepared for instances like this, and we came through it without any issue.

As we got ready to leave on Monday we noticed DR had a small rash.  We assumed that it was the difference in weather and the fact that he had been in the river the evening before.  Little did we know that the rash was just the tip of the iceberg and far from over.

From that moment on the next 4 weeks would include 5 scary hives outbreaks, an anaphylactic reaction, an ambulance ride and hospital stay, a unexpected but necessary allergist change, a new allergy diagnosis, and a potentially delightful surprise.

~Lacey

 

Advertisements

Hindsight is not always 20/20: DR’s story

With most life threatening issues and mistakes in life, when we look back on them we can clearly see the cause and how it could have been avoided.  Unfortunately, many medical conditions like food allergies are exempt of this clarity, even after the fact.

For the first 18 months of his life, DR clearly had something going on.  He was sick every two weeks, constantly in and out of doctor’s offices, and sometimes admitted to the hospital.  His eczema only got worse with each flare, and nothing seemed to really “cure” it.  Doctor’s were unsure and sometimes baffled by his issues.  My husband, Justin, and I were exhausted and at our wits end.

When we finally found answers during our first allergist appointment for some of his problems we looked back to all we had dealt with and could not find a clear time when that had been the cause.  In these instances, the food allergies and their reactions were unavoidable.  The proceeding incidences due to the food allergy are ones that fall into the hindsight-is-20/20 category.  Once you know what to look for, mistakes become neon reminders of what you should have and could have avoided.

Hindsight with food allergies may not always be 20/20, but I can guarantee that foresight for a food allergy mom is even more calculated and precise.  Our knowledge of what goes into our children’s mouths, comes in contact with their skin, and is carried by others is so vast that we can catch almost any danger….almost.  Issues arise and the cycle repeats when new allergies arise for which we are unaware and unprepared.  You will see this many times throughout our posts, especially with DR and MH with their many allergies.

~Lacey

Perfection

As a mom I have, at times, striven for perfection.  Especially in today’s society where our lives are broadcast on social media, and judgement abounds around every mishap.  The past month, I have seen as the world has sought to “crucify” parents who have made unintentional mistakes (the gorilla and alligator incidents):  critics call them careless and avoidable.  Of course these situations can be deemed avoidable now.  As it’s always said “hindsight is 20/20.”

I have experienced several of these moments in my own three years as a mom.  Many of these experiences were due to my son, DR’s food allergies.

Since I found out, he had these allergies I have blamed myself for plenty, even things that are beyond my control.  First, I blamed myself for the fact that he even had allergies.  I am allergic to tree nuts as well as other environmental elements, so I assumed that my genetic make-up was the cause of his allergic tendencies.  It took me a very long time to realize that I had no control over this.  I could not have predicted in a million years that he would develop his peanut and egg allergies because of my biology.

Then came the guilt when he would break out for no known reason.  I would scour ingredient lists and pour over food diaries to find the culprit, only to be disappointed when it was something I had missed earlier that caused the reaction.  I would beat myself up for days after he had healed, determined to overcome my own stupid, fallible, human nature.

Finally, I felt less than human when he would catch me eating something he couldn’t have.  I was lowly, unworthy of his love because I expected him to go without when I couldn’t.  I would vow not to give into the cravings.

So as you can see, I alone have placed this blame; unfortunately, this is not the end of it.  I have been on the receiving end of unsolicited and cruel comments about my parenting by many others.  When we had to rush him to the Urgent Care because of a reaction to peanut butter months before his diagnosis, the doctor basically accused us of feeding him an egg product to which we knew he was allergic.  When he breaks out it his eczema rash, people constantly comment like we aren’t trying to fix the situation, like we are the reason he has this issue.  When he ended up in the hospital (non-allergy related), a close friend called to inquire that perhaps his illness was a punishment for the fact that his father and I lived together before marriage.  All of these comments were unnecessary and unwanted.  They did not help us.  In fact, they caused more issues.  They made me doubt myself as a parent, made me work harder toward an image of perfection I could never reach.

I couldn’t bear it anymore, so I stopped.  I stopped striving for perfection, and instead focused on those things I could do to protect my son.  I spent less time listening to others and more following my intuition.  Had I continued listening to and caring about these comments, I would have lost everything:  my self-confidence, my mind, and my relationship with my amazing son, but by accepting my imperfections, I now have everything.

~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

 

Egg-zema

When DR was four months old we noticed a small, red, scaly patch on his cheek.  At his check-up, the pediatrician told us it was eczema.  We were advised to keep it moisturized.  This was in August in the mountains of NC.  The weather up to this point of his life had been sunny and warm.  We were not at all prepared for what happens to eczema during the dry, frozen days of winter.

As the winter approached, DR’s eczema got exponentially worse, spreading to his hands, arms, feet, legs, back, torso, and the rest of his face.  The only part of his body that was not affected was everything covered by a diaper.

He celebrated his first 6 months of life in October, and we began feeding him foods.  Still the eczema spread and worsened.  We were told at that check-up that food allergies were a possibility due to family history of allergies to tree nuts and peanuts; however, they wouldn’t test for them until he was a year old or had a severe reaction.

Before his first birthday, DR had two different hospital admissions due to dehydration from normal childhood illnesses.  This caused his skin to worsen to the point that it was literally peeling off.

At this point, he had several rounds of oral and topical steroids and antihistamine.  No matter what we tried, though, there was never complete relief.  Due to constantly having to use these medications, we could not see an allergist.  Finally, when he was 18 months old we made it a week without medications and met with an allergist.  At this appointment we discovered his egg allergy.

From that moment forward, we cut egg from his diet as best as we could.  When he accidentally had an egg product, his rash would flare up.  However, cutting it out completely did not rid him of all the eczema.

In an attempt to make it better, we made the decision to move to Savannah, GA where the temperatures are steady and warm year round and the salt water in the air is considered healing.  After a couple of unexplained flare ups, we went in for another allergy test. We discovered his peanut allergy, so we cut that from his diet as well.

His skin is remarkably better now, with flare ups fewer and farther between.  We have hope that vigilance on our part and the possibility of outgrowing the allergies will end his eczema for good.  Who would have thought that something like a food allergy could impact another medical issue so much.

~ Lacey