Allergic to Allergies

My son has every allergy you can imagine. It’s a lot of work. He went into anaphylactic shock three times before the age of three. He has sneezed more and produced more mucus than the rest of my entire family put together. And while that fact is funny, it is no laughing matter. As exhausting as it is for me, I can only imagine how incredibly deflating and tiresome it is for him. He’s proven to be quite a trooper and is famous to my friends and fans as SuperBoy. Boisterous you think? No. let me explain.

Kenneth was born at approximately forty weeks to the day. He came out with a push and a half. He was more than eight pounds, almost two feet long, and had a faint mustache. At three months old, he would scream after every bath. I thought he didn’t like to be nudey in the breeze. No, he had eczema, and the lavender bath soap and lotion that I was using was torturing him. I didn’t know until one night when I only had cocoa butter at my disposal. After smoothing it over his little man body, not only was he not screaming, he was relaxed and comfortable. His skin needed that moisture and oil and he was pleased. At his next check up the doctor said: eczema. Eczema? Ok, I can handle that. No dyes or perfumes and plenty of cocoa butter. CHECK!

He trucked on through those next few months without incident. His skin was soft and smooth and his hair was super-curly-awesome! He was handsome and happy. I nursed Kenneth for seven months and when I switched to formula, a different set of problems started; sneezing, coughing, runny nose, congestion. So. Much. Congestion. After about a month of formula, Kenneth was transported by ambulance to the hospital. It was Christmas Eve. Pneumonia; the doctor said.

I watched as my infant child was held down by four adult women and then given an IV. I stood by as he was wrapped in towels and had his nose suctioned to remove the excess of mucus. I was witness to him receiving breathing treatment after breathing treatment after breathing treatment. And he still struggled to breathe. We spent his first Christmas in the hospital, sharing a twin sized hospital bed and slept at a 30-degree incline. I was broke, had no prepaid minutes on my phone, no charger for my phone and no change of clothes. At the time, I received a few visitors and I received a pair of fuzzy pajamas and socks. i also received a beautiful painted glass tile that doubled as a comforting nightlight. It was a really rough time and those few items helped me to feel at ease trying to help him feel at ease.

When we were finally released from the hospital, I went home and cried. Kenneth was almost back to himself, but I was exhausted. I called friends to see if someone could come and watch him while i tried to nap, but i wasn’t that lucky. i cried more. It took almost two weeks for his arm to heal from the adult-sized IV needle that was jammed into it. The bitch nurse that did so laughed at me for crying while i watched her shove a needle the size of a McDonald’s straw into his arm. She smirked and said “are you going to be alright?” and then smiled at the other nurse that was helping to hold my child down. I wanted to punch them both in the face. I will never forget her rude, inconsiderate, wrinkly mug. I hope i see her another day so i can tell her just how ridiculous and subpar she was during such a sensitive and traumatic moment in our lives.

Pneumonia, huh? It came on so suddenly. He hadn’t been sick or outside. It was December but it wasn’t cold (I mean, this is Southern California). But ok. Pneumonia, I guess. No dairy for a few days, no exposure to the cold, keep him hydrated and take all of his medicine. Got it. Pneumonia? We can handle it! CHECK!

Kenneth returned to the hospital emergency room just two months later. This time they said bronchitis. Bronchitis? Isn’t that one symptom shy of pneumonia? Good grief. But ok. We didn’t stay. I refused to be checked in or admitted. We got our diagnosis, our prescription and went home.

This became a cycle that went on for about two years. Kenneth was either at the doctor, or at urgent care. There were also a few emergency room visits. He was transported by ambulance again, when he was about four. We’d actually gone to the doctor, but his blood oxygen was so low that she called 911. Devastating.

Every episode was a bout of coughing, sneezing, snotting, choking, and pure misery. Sometimes his eyes would just scream “help me!” It was just murderous to watch. I always felt like I’d done something wrong; done something to him. I wondered if I’d inadvertently made him sick. But how, how do you give someone bronchitis or pneumonia? What set of skills do you need to have to impart such a condition? I felt guilty, and like an outsider. I had to stand back, step out-of-the-way, and watch other people care for my son.

I didn’t know what I was in store for. I had no knowledge of food allergies or their impact and effect on my infant/toddler child. I spent days, nights, and weeks watching my son struggle to breathe. He would not eat because he couldn’t breathe and there was just so much mucus that every swallow would lead to choking. He was miserable and I was too, twelve times as much. No one wants to see their child suffer through any kind of illness. It makes us parents feel helpless and ineffectual. We are the care providers and we are outdone and undone by a “bug”, a flu, a pneumonia. It sucks.

As time went on, Kenneth’s flare-ups would become (what I thought was) somewhat predictable. But then there were also times that they came on suddenly and unexpected. It was a life-or-death guessing game. Russian roulette… with an unknown weapon that had a hair-sensitive trigger. Every time I thought I knew what was going on, something would pull that trigger and I’d be back to square one. At some point the pediatrician said that Kenneth had asthma. Just “asthma”. Did I mention that he was diagnosed with eczema at just three months old? Yeah, so there was that, and now the asthma. Inhalers! Nebulizer! no cold, no wind, no dust, no pets!! asthma? CHECK!

The worst part of any and all of this was watching my son have to deal and adjust. He received shots, syrups, chewables, breathing treatments, inhalers, and steroids. STEROIDS! You know the culprit: prednisone! awful stuff. I mean, an absolute God-send in the way that it targeted his swollen bronchial tubes and allowed him to breathe. but HORRID in the way that it turned him into an emotionally unstable toddler HULK! He was bouncing off walls one minute, crying the next, and anywhere in between at all times. One morning, I had to get him ready for our morning commute. At that time, I just got him dressed and put him in the car. He never woke. But one fine morning, he did wake; and he cried and cried and cried. I knew it was the prednisone taking hold of his emotions. He was inconsolable and it ripped my heart out. So, considering all that he had been through and was going through, I had to decide if I should actually give him the prescribed medicine that he needed to make him better: TO HELP HIM BREATHE. Or I had to watch him struggle with every breath. Whatta crock!

I called the pediatrician and described what happened. Kenneth was prescribed an alternate course of medication that had zero to no effect and nearly had us back at he hospital the next week. Again, I realized the gravity of this drug induced torture upon my child. Kenneth became so disagreeable and defiant. And moments later he would be crying. To make matters worse, I had to leave him at childcare on some days knowing that his heart was broken and that he didn’t feel good. I really don’t know how I kept a job through those years.

During all of these bouts of asthma and eczema flare ups, my son would have allergic reactions to particular foods. At almost 3, he nearly died from exposure to peanuts. And that was the THIRD time that he’d been in anaphylactic shock. I have no idea what was the cause of the first two situations. He would vomit when he ate eggs, wheeze when he ate marshmallows, and all dairy products would descend upon his sinuses and create a constant and steady congestion that would surely lead to urgent care. I missed hours, days, and weeks of work. I spent many nights watching him, holding him, and administering medication at all hours of the night. I was tired for me and exhausted for him.

We have come a long way, but we didn’t do it alone. Kenneth is nine years old now. He is tall for his age, and slender for his size. He destroys a pair of shoes every two months and could eat his weight in pizza and ice cream. He spends his spare moments drawing, reading, chasing Pokemon, and doing those things that classify nine-year olds as exactly that. It took years for us to get to a point where he could just live his life comfortably. I blogged about her some time ago, but his health and well-being is due in part to our pulmonologist. She prescribed a strict regimen of maintenance medication that makes it possible for him to run, jump, and ride bikes without a hospital trip. He still has flare ups and complications now and again, but it’s nothing that we can’t handle.

I joke that “I’m and untrained, unlicensed, unrecognized respiratory therapist”. But it’s the God’s honest truth. Kenneth went to camp this past summer — for a whole week! The thought of sending him away gave me anxiety. I had to load his medical history and medication profile into the camp’s online registry. It seemed arduous at first, but I simply sent the prescribed medications in their proper containers with their pharmacy labels and all things went as flawless as if I’d been there myself. His school, our church, and camp are all very considerate and helpful. Our camp liaison returned with kudos from the nurse stating “he was awesome”. He didn’t have any flare ups while camping. 🙂

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Photo courtesy of Forest Home Christian Camp: The Village Summer Camp 2016

I belong to and monitor several support sites: Food Allergy Research and Education, Kids with Food Allergies, and suggest that everyone support and protect their allergy sufferers with awesome products like the ones available at AllerMates.

My twins had shown some food sensitivities in their early days, but luckily it appears they’ve dodged that bullet. They just turned three and we can have them tested to know for sure. While I certainly want to know if they have any allergies and avoid all near-death experiences, I dread the blood drawing and the possible bad news. I’ll credit their mostly organic diet for their improved health. Our household is predominantly organic, and we do our best to avoid those dangerous agribusiness foods like: high fructose corn syrup, food dye, food color, and most preservatives. I am certainly not perfect at any of that, but each effort and experience is worth it to know that my kids won’t glow in the dark next week.

As the title states, I am allergic to allergies. And I mean that. I myself have airborne allergies and what appears to be a sensitivity to shellfish. I also battle a mild case of seasonal eczema. But I consider myself armed and dangerous when it comes to food allergies, asthma, and eczema. I have a wealth of knowledge, a library of pamphlets, and assorted literature, and have spent a MINT on prescriptions, over the counter, and other support products to aid my ailing child(ren). I know my  children’s medical history word-for-word by heart. I have their medical profiles and current medications loaded into my telephone and have established heartfelt personal relationships with their doctors, nurses, and specialists. I hope you’ll do the same should you find yourself in this predicament. You’ll thank me later.

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allergies, asthma, and aha’s

i was close to twenty years old, living in Hawaii and JUST found out that i had allergies. nothing severe, but enough to make springtime in the island of aloha slightly more annoying than beautiful. for the first time ever, i discovered MY sinus, where it was located and that it was the source of a great deal of distress. dis-STRESS! and it was another ten years before i experienced my first asthma attack. again, nothing major. it came with a bout of bronchitis that had me down for a week. i may have used my aunts inhaler a few times over the next two days. in the long run, it seems i was lucky.

that luck has come in pretty handy when dealing with the one and only SuperBoy! being the parent of a child with allergies is rough business. i am unable to imagine how i could be helpful to him if i didn’t have firsthand experience. that’s not to say that those without allergies or asthma are of no assistance, just that it provides a level of “comfort in knowledge” for he and i. i have more comfort asking him about his pains and ailments and am more able to help him define the specifics of what’s going on.

while mild for me, allergies and asthma are very serious where SuperBoy is concerned. he has been in anaphylactic shock three times, hospitalized on three occasions for other allergy related ailments, and spent the better part of his six years being triaged, diagnosed and treated in emergency rooms, urgent care centers and doctors offices. i have spent his college fund and any vacation monies on prescription and over-the-counter medications. this is, in fact, why i call him SuperBoy. he’s a trooper. he takes it all in stride and embraces the reality of his condition. he doesn’t resist much (‘cept SHOTS) and is quite charming, as always.

today, SuperBoy saw a pulmonologist! a certified professional assessor of breathing (and asthma and allergies as they pertain). she is an amazing doctor who started our visit with a quick handshake and an immediate verbal interaction with my son. he was a bit bashful today and so we moved quickly into the “getting to know you” phase. she simply stated “i see he has a strong history, tell me all about it, I’M HERE FOR YOU NOW“. and that, my friends is what’s known as bedside manner! needless to say, she had the obvious knowledge and experience of someone who’s been helping children breathe and improving their quality of life for as long as i’ve been breathing and alive. her words brought me an instant feeling of compassion and understanding. she’d read his history (as requested of me with the intake paperwork) but exhibited a real interest in the QUALITY of my son’s life.

i led her through the milestones and major events of SuperBoy’s amazing existence. all the while she took notes but rarely took her eyes off of us. she asked what she wanted to know but already knew the answers. she kept her eye on him and soon asked him join her at the examination table. still bashful, he resisted, but she appealed to his gentlemanliness with requests for assistance in opening some drawers that doubled as steps. SuperBoy can’t resist a damsel in distress! she examined him and listened thoroughly to his breathing (remember? he had bronchitis two weeks ago, and the stomach flu last week). she spoke briefly with a young resident (medical school intern student person along for the ride) and returned to the chair next to me. again, she floored me with her understanding of us (i paraphrase):

he’s a good boy. handsome obviously, and smart. his lungs sound good. clear. he has been fortunate, he’s had some good doctors, BUT HE HAS A GOOD MOM. the doctors have guided you along the way, as they should, but you’ve done a good job making the right choices for him and you. my job is only to assist you further in maintaining a good quality of life for him in which he can be a child, be a boy, play and do sports and you’re both comfortable. we need to change a few medications and tweak a few things and it will all go smoothly. we will test his allergies and find out where he stands and keep an eye on everything. tests can only tell us this or that. but what you see with your eyes and what you know is what is true. what you experience is what is true. ok mom, let’s go over his medicine.

a weight was lifted. a weight i’ve been carrying for almost six years. you can never hear “you’re a good mom” enough. i believe the words but have doubts, as i think most parents do. i’ve been told by family, friends, coworkers and other doctors, but this time it really soothed my soul. i’ve spent so much time and energy worrying about my choices to limit certain foods and activities. questioning my own judgement calls. this lady is a doctor of breathing! and she gave me kudos for keeping my son breathing. it was the best pat on the back i’ve received in a looooooong time.

after changing pounds to kilograms, she tweaked his prescriptions, gave me a list of medicines to swap out, requested a phone book sized list of tests, showed me a short video and had her nurse demonstrate a few things, we were on our way. before leaving, i was given the option to request any additional foods to test for allergies. an option? for me??? i’ve been waiting for this!! for three long years!!! to pick and suggest things that iiiiiiiiiii think could be affecting him. happy happy! joy joy!!

perhaps (at this point) you’re (a little) unaware that this may possibly have been the best doctors appointment for me where my sons allergies and asthma are concerned. THE. BEST. after almost six years of battling allergies and asthma, after three long years of dealing with food allergies and reactions, after years of colds turned bronchitis within hours, years of missing school and work and fun — we have someone telling us that not only could it not have been avoided, but that we have been doing the right things all along. HALLELUJAH! she requested a follow-up visit in three months to assess her assessment.

being sick can be hard. having asthma and allergies is harder. and caring for yourself during those times is nothing less than excruciating. caring for a child who is sick because of asthma, allergies and food allergies is one of the most painful things a parent can endure. it’s a sit and wait type deal. you have to watch everything they eat and come in contact with, while trying to keep them as normal as possible. you have to teach them how to protect themselves and deny themselves yummy treats if you’re not there to examine and approve said yumminess. and if something does happen, you do what you’ve been trained to do and then you have to wait. wait for the reaction, wait for the medication to set in, wait for the breathing treatment to work. wait wait wait. all while involved in a life or death situation.

as the parent of a child with life threatening allergic reactions…. you worry, you question and you fear the worst, everyday. you arm your little one with emergency medications, information, phone numbers and the like. and still, you worry. if you’re lucky, you get a doctor who can explain it to you in a way that makes you comfortable, yet informed and prepared. if you’re luckier, you get a doctor who says “don’t worry, you’ve been doing it right all along”. this was that doctor for me and this was that day.

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my first, my little man, my SuperBoy.