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"Reactive airways"

Here we are... Asthma Management Plan in hand for one of our toddlers. Last February, O had a severe case of RSV that put him in the PICU for four days. Shortly afterwards, we were seen by an asthma/allergy doctor who told us that O has "reactive airways." We actually had not noticed his retractions, induced by simply walking around the room. She asked, "Does he always breathe like that?" She was very helpful and put him on Singulair, but I left that appointment feeling like a horrible mother. The big question running over and over again through my mind, "How did I miss that?" He stayed on Singulair for a couple months, into the summer. We-- thank the Lord!-- managed to avoid catching any summer colds. The summer passed easily and O finished his prescription on Singulair. I watched his breathing and didn't feel that it was "out of control." I still noticed those retractions, but they didn't seem that bad. Maybe he was doing fine?

September came and the weather cooled. Our boys caught their first cold of the season two weeks ago. It passed around between us, a mild cold that only caused congestion. While our preschooler and C seemed to have caught it and moved on, it settled in O's chest. He was up two nights ago coughing intensely, the next day he started wheezing, and that afternoon he started retracting. Always a good natured child, he smiled and giggled all through that night, snuggling in bed with my husband and I while we nervously watched him labor. Yesterday morning I brought him into the pediatrician for a breathing treatment. His oxygen levels were still good (the color never changed in his face and he wasn't lethargic or we would have been at the children's ER in a heartbeat!), but his retractions were intense. The breathing treatment helped and we discussed what I should do at home. Our CPNP gave me the option of an Albuterol inhaler or the nebulizer. As an (adult) asthmatic, I know how and am comfortable administering a breathing treatment with the inhaler. I even had given my oldest breathing treatments that way when he was a toddler, thus I chose the inhaler.

That evening his wheezing became much more intense. His retractions really picked up. I gave him a breathing treatment via inhaler with a child-sized spacer and it went okay. He wasn't fond of me holding him down, but he did take the required dose. Off he toddled, wheezing less but still retracting. My forehead furrowed... what should we do? He slept fitfully through the night. I heard him cough and toss and turn. I listened and each time he managed to fall back asleep. I worried through the night. Is he in there struggling? Sleeping? Is he okay?

This morning his wheezing was back in full force. I wrestled with him through a breathing treatment. He saw the inhaler and took off running, apparently no longer curious about the bears on the side of the spacer. I made him an appointment with the pediatrician to possibly get another breathing treatment and to discuss our options. I worried about the rest of the cold season. Would we end up back in the PICU? Or continue coming to the pediatrician every time he gets a cold, like we did last season even on Singulair? Where do we go from here? I felt like Singulair wouldn't be enough, but that what we were doing (nothing) wasn't covering it. And, for a number of reasons, I wanted to see a different asthma/allergy specialist. We saw a different doctor in the practice since it was a last minute appointment and our CPNP was unavailable. However, our CPNP met with the doctor before our appointment and filled her in on everything. Our doctor walked into the appointment fully knowing O's story and had reviewed his chart. Instead of spending the appointment filling her in on his past medical history, she knew his history with RSV already and about his history of wheezing, as well yesterday's appointment. We spent time discussing family history and really listening to O's lungs. She confirmed the reactive airways diagnosis, stating that it is really difficult to say that a 17-month old definitely has asthma. Although, considering our family history and O's personal history, she would guess that this isn't something he will outgrow. Regardless, we need to treat it now. And so we wrote a treatment plan for O's reactive airways.

Yesterday when O came into the pediatrician for breathing treatments he was in the "Red zone." Today he is in the "Yellow zone." We want him to be in the "Green zone." Here are his medications for each zone, each given through a nebulizer unless stated otherwise:
  • When he is in the "Green zone," he will only take Pulmicort twice a day. Symptoms in the "Green zone:" breathing is good; no cough or wheeze; can work and play.
  • In the "Yellow zone," he may need 2 puffs of his Albuterol inhaler through the spacer. Within an hour he can take a dose every 20 minutes, up to 3 doses, if we are out of the house. If we are home, an Albuterol treatment with the nebulizer. After the hour, if his symptoms keep improving, he can continue taking puffs from his inhaler every 4-8 hours, if needed. She said that if were to come down with a cold, we could use Orapred, a corticosteroid, for 5 days. This is more effective in managing a flare-up than bursts of Albuterol, which is a bronchodilator. Symptoms in the "Yellow zone:" coughing, wheezing, tight chest, wakes up at night.
  • The "Red zone" means trouble. Starting with the symptoms: medicine is not helping, breathing is hard and fast, nose opens wide, can't walk, ribs show, can't talk well. We continue with the Albuterol and Orapred. We contact our doctor and see what she recommends, or we call 911. She said, if we follow our action plan, that usually we will be calling 911 instead of the pediatrician's office because we will have followed all the steps they would recommend. We don't want to be in the "Red zone."
We had to do an Albuterol treatment this evening, our first at home. O started retracting and wheezing, his nose started flaring some, and he could not catch his breath. I whipped out the nebulizer and set everything up. At first he wasn't happy. The breathing treatments in the hospital for his RSV were very quiet. With a nebulizer, the machine is loud. He didn't like it at the pediatrician's office and he didn't like it at home. I held him in a cradle hold so he couldn't turn his head away from me and sang him "Beautiful Boy," a favorite of ours. He calmed down by the end of it. The nebulizer treatment took about 10 minutes, as our pediatrician said it would. During that time, my other toddler got a fat lip and pulled every book off the bottom shelf of a bookcase. I told my mom that I kept saying, "If you take that book off the shelf, I will... okay, seriously, if you take that next book off the shelf, I really will... this time I mean it, do not touch that book... please? Please don't touch that book?" I really think C knew that Momma was busy and could not get up to wrangle him. The fat lip... he took the box the nebulizer came in, laid his blanket over top of it, and then banged his head on it. Why? Does that even make sense? He looks up and there it was-- a fat lip. For the Pulmicort treatment before bed, I put C in his crib while I gave O his treatment. Containment: a twin mom's best friend.

All along this road, every doctor we've spoken to about his wheezing and reactive airways has mentioned his severe RSV back in February (see my blog post, "RSV and premature babies"). Today our pediatrician mentioned it. She said that there are many studies about whether RSV triggers reactive airways or if children with reactive airways just come down with severe cases of RSV-- what comes first? This question has really weighed on my mind. After talking with our doctor today, I don't think it matters so much. Perhaps O has reactive airways because of his severe case of RSV. Perhaps he only had such a severe case of RSV because he's always had reactive airways; remember, his identical twin brother had RSV at the same time and only had an ear infection with fevers-- not even a trip to the ER for him. My heart does break for O. Watching him retract the way he does and holding him against my chest, hearing that wheeze shake his little lungs... I want to protect him.

My mom has always joked that my kids are going to put me through all the things that I put her through. For instance, I was a breath-holder as a baby; my oldest was a breath-holder. (He was the most intense case our pediatrician had ever seen! He grew out of it at three, though he recently had breath-holding episodes in recovery after his umbilical hernia surgery.) I am exceptionally stubborn and I have two very stubborn children. However, both my mom and I agree that I do not want to experience the terror of watching your child suffer from an asthma attack. As a teenager I had a severe asthma attack; my momma was by my side in the ambulance. Right now, when I think about O and his "reactive airways" and possible future with asthma, that fear is what grips my bones.

I feel much better with our Asthma Management Plan in hand. I feel much better knowing that if these meds don't get him under control, we have other options. I feel much better knowing we have a doctor who is invested in our child, managing his asthma, and communicating with us. I'm not sure why it was so hard facing an action plan or really getting the help. Perhaps I was afraid of admitting that he could have asthma and could always need to know where his inhaler is or avoid running outside when the seasons are changing or take medications twice a day for the rest of his life. Are those things so bad? Not in the scheme of things. But I didn't really want them for him and it has been hard for me to swallow that maybe... maybe he does have asthma. Right now I'm much more comfortable with reactive airways.


Mel said…
my heart goes out to you and your little one. nothing is worse than watching your sick child! praying for you all
Kimber said…
Thank you, Mel! It feels good to have a plan. Praying this helps him out this cold and flu season!
April P said…
Very similar story with our son, now 5, except his reactive airway started at 6 months of age yet is milder than "O"'s. The pediatric group that we are now at... we love, except their asthma "specialist" - a CNP has given him the label of Asthma without doing any pulmonary testing. She is going off of the sole history of him wheezing after colds. This is Reactive Airway, not Asthma. She says, oh anyone who wheezes has asthma. Well, she is wrong... I have researched enough real pulmonary specialists to know that. But, my question is just that, where do we go from here. I do need a plan because perhaps his fatigue and "snoring" is stemming from untreated allergies and/or mild asthma. I similarly have Reactive Airway, for example this fall weather is making me feel as though I can not get a breath. Is that reactive then, or a true (mild) asthma. Any help appreciated.
Kimber said…
April, I am not a doctor and do not give any medical advice! From my research, children do not receive an asthma diagnosis until age 2. However, with our family history, our doctors consider O to be asthmatic. I am also an asthmatic and move around the country since my husband is in the Navy. Asthma comes in many forms and has affected me differently in each place we live. You should talk to your doctor about it. Best of luck to you and your family!

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