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Life still goes on

Our toddler old was diagnosed with reactive airways disease last spring and we recently wrote an action plan for him with our pediatrician. Looking online, the blogs and medical sites use the acronym RAD (Reactive Airway Disease). There is a lot of conflicting information out there regarding whether or not a toddler can be definitely told he has asthma. Medscape Reference states that a child needs to be "at least 5 years of age" before he can diagnosed with asthma in their December 2011 article "Pediatric Reactive Airway Disease." Expert Advice in the "Asthma: Difference Between it and RAD" Q&A, February 2002, says the diagnosis can't be made in "children under two years of age." Both pediatricians we saw as well as our CPNP and asthma/allergy specialist told us that O has reactive airways with a high probability of it later being diagnosed as asthma, considering our family history and O's personal medical history. While he does not have a diagnosis of asthma, we are proceeding as such because of his own medical history.

We've started using new words around the home. Instead of saying, "He's really laboring to breathe," we say, "He's having heavy retractions." We already used wheezing, but now we talk about crackling lungs instead of saying, "He's catching when he breathes." Flare-ups, yellow zone, nebulizer, breathing treatment... Our preschooler asks how O is doing and our non-asthmatic toddler watches the administration of breathing treatments to see if he's missing anything.

Last night I sat on the floor of the living room with my husband, showing him how to work the nebulizer and how to give a breathing treatment. We talked about O's medications and what they were for: Pulmicort, Albuterol, Oprapred, as well as his short-term antibiotic. We used the word "corticosteroid" several times today. I myself take a corticosteroid twice a day, Flovent, and have Albuterol inhalers tucked in key places around the house (though I haven't had to use it in awhile, knock on wood). However, I am comfortable telling my doctor that I need a refill on my bronchodilator. It seems like a whole different ballgame having my son need a bronchodilator.

Corticosteroids are used for asthma management. This is what keeps your lungs "in shape," and is often referred to as a maintenance medication. No matter what "zone" he is in (check out my blog "Reactive airways"), he will take the Pulmicort twice a day. An article in Doctor's Guide titled "FDA Approves Pulmicort Nebulized Corticosteroid (Budesonide) For Asthmatic Children" says that use of "inhaled corticosteroids has allowed physicians the ability to target inflamed airways." In "Managing Your Child's Asthma" published by the Children's Hospital of St. Louis, it states:
Sometimes, flare-ups do occur even when asthma is controlled with the best possible means. At these times, your physician may prescribe Prednisone or Orapred, oral steroids used to reduce the inflammation in the airways and help in the resolution of the asthma flare-up. These oral medications are given for 5-7 days.  
O has an Orapred prescription for those flare-ups." I really like this article from the Children's Hospital of St. Louis, so I'm going to quote them again for the bronchodilator, Albuterol, or "rescue medication:"
The most commonly used rescue medication is Albuterol, which relaxes the contracted muscles surrounding the airways and helps move air through the airways. Use this when your child is having an asthma attack or when you expect an asthma exacerbation...
With all of these medications and things to watch and keep in mind, having an Asthma Management Plan is key. This is something that we wrote with our pediatrician. Again with the Children's Hospital of St. Louis article, "An asthma action plan will help you manage your child’s asthma on a daily basis as well as serving as a guide for a) what to do if an asthma attack occurs and b) when to go to the ER for help."

We spent awhile today brainstorming what we are going to do when leaving the boys with our childcare-- drop-in childcare and with our baby-sitters. Our big dilemma is that our twins are identical. We wouldn't want our regular baby-sitter giving C Pulmicort when it is O who needs it, or for O to go unmonitored at drop-in childcare because he was confused with his brother or lost in the crowd. Or what about at the church nursery where there seems to be a new volunteer every week? I did some online research as well as posted on some twin groups. In all the websites I looked at, there seemed to be three basic options of bracelets: stainless steel small classic bracelet from American Medical ID, children's adjustable alert fashion bracelets from Colonial Medical Assisted Devices, and a 3-pack of toddler sized asthma alert medical ID rubber bracelets from E-Bay. What kind of bracelet works best for a 17-month old? I don't think he would keep a Velcro bracelet or the child-size rubber bracelets on. I'm also concerned about the information on the engraved medical ID. If we engrave Pulmicort and it gets changed, we would need a new medical ID... but don't we want to list his medications? Ugh. I don't know. I did get some great tips from the twin groups, such as zipper pulls and shoe charms (although I'm lazy and his shoes are Velcro... haha!). My husband had a great idea this afternoon. You know those clear ID badge holders? He suggested I make a chart on the computer, print it out, and cut it out to fit an ID badge holder. I could have O's information visible on one side and print the medical symbol large for the other side. These would be much more affordable to make, so I could clip one on his diaper bag, hang it one on the stroller, and even attach one to O's person. This addresses all my concerns, making sure they would have all O's information in an emergency and preventing my toddlers from getting mixed-up. (Just one of a million reasons why I love this man!)

We did well today. O had a rough nap and slept fitfully. He woke up wheezing and out of breath. We watched him for a little while, "Does he need Albuterol? Is this just his cold working its way out? No, he's really wheezing... but he's smiling..." Every medical professional we have encountered has remarked on what a sweet boy O is. He always has a smile. He is very obedient. It makes it easy to treat him, but difficult to assess where he's really at. Even with extremely low oxygen levels in the PICU last February, he had smiles for the staff. We ended up giving him an Albuterol treatment this afternoon, which took care of the wheezing. I even left my husband home alone with the boys while I went to the movies with girlfriends. He gave O his Pulmicort and I tried not to think about him the whole time I was out of the house. It was good to get out for a bit.

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