Saturday, February 23, 2013

Holding an Umbrella

I brought Calvin in to see his asthma Specialist last week, because I thought I had finally broke the code to managing the monster. All I needed was the green light to move forward with the new and improved treatment plan. The simple thought was to remove the drug Singulair, add Zyrtec, and replace Flovent with Advair. Simple right? No, I am not that lucky.  

Now why would I want to take him off Singulair, the only drug that stops the body from having an allergic or triggered asthmatic response? The drug that prevents mucus from clogging the head and the chest. The drug that is better than your regular antihistamine. I won't bore you with the scientific details, you can google it. Just know that it's a drug in a class of its own, very effective in treating allergies AND asthma. BUT this unique drug comes with a known side effect. It can cause aggression and behavior problems, which is something we've seen in Calvin and have suspected Singulair to be the dark passenger. We had done a trial of our own when Calvin was four, without the doctors approval for two reasons. The drug was expensive (no generic at that time) and we wanted to see if his behavior would improve. It did. We had three excellent months until he got pneumonia, and then we were blamed because we'd taken him off of Singulair without approval. Breathing is more important than behavior. Understood. However, he's in first grade now and aggression doesn't fly in school. Since Calvin has actually been in a somewhat stable place for the last six weeks, experimenting again is an option. I'm just going about it the right way this time. 

Now for the maintenance steroid inhalers. Swapping out the Flovent for Advair seems like a no brainer because the drug is seriously a magic potion. When Calvin inhales this, it's as if he doesn't even have asthma. He is six years old, so he can and has taken it during a respiratory illness, so why not on a regular basis? I'll get to that in a second. First, what makes Advair better than Flovent? What it comes down to is higher concentration, so it's a stronger dose of steroids. Two puffs of Flovent is equivalent to one puff of Advair, with the addition of another drug (the secret ingredient), which is what makes it magical unlike the Flovent. Now when Calvin is sick, he's taking three to four puffs of Flovent, so it only makes sense to switch to Advair anyways. Not so. Apparently this drug is for adults, it's an adult dose. In children, it has been known to cause stunted growth. This has already been a concern for us. Calvin has been in the 10-30th percentile for height and weight, since he was a baby. He hasn't ever hit average. A child struggling with a chronic disease cannot grow properly because all their energy is being used to stay alive, not grow. If you find the right balance of meds and stabilize their condition, that child will be able to grow. However, if you overmedicate, the steroids will prevent growth and cause a host of other problems. 

My green light was NOT simple after all, it would bring the high potential for ugly consequences. It feels so much like a bad game. I'm trying to win but my crappy cards are making that difficult. Yet I refuse to lose, so how do I cheat this monster? There is nothing simple about changing around meds. If I make the wrong move, I could easily hurt my child, if I don't move at all, I hurt him too. Any way I choose, I feel screwed because that is what chronic diseases do, they screw with your life. We're stuck with making tough decisions. Should we try it for a couple months and should it work then what? We'll risk him being shorter and having the complications that come along with being on a higher dose of steroids? Or do we go back to the behavior problems and more frequent/dangerous respiratory illnesses?

I want to cry and I can't. I'm too angry, hurt and overwhelmed to cry. I want to fight this beast for good. Everyone keeps saying, he'll grow out of it. I've heard this for so long and it's just a faint hope inside me. It should happen, I hope like crazy it will happen but for now, for now it's scary and it hurts like Hell. This could all blow up in our faces. If he gets ill and doesn't pull through it well enough, then we have to put him back on Singulair. So, I guess we just wait and some of the answers will make themselves known. I hate waiting and wondering. Either way this goes we're stuck with the consequences and I don't know that there is a lesser of two evils to be found. It's easier when the choices are taken away from you, going out on a limb to experiment is much harder. Especially when you're playing with the breath your child takes. 

Here's the worst part of all this, he's becoming more aware of what's going on. The things being said and he's afraid. Who wouldn't be? Now I have a whole other challenge to deal with. I need to be calm, to keep him calm. I need to be strong but I'm barely keeping the fear at bay myself. While the Specialist and I were talking, Calvin interrupted with a frightful voice, about to burst into tears. He was panicking over the big words the doctor was using like "chronic diseases." Recently, Calvin has become very afraid of death because he knows people have died from complications of asthma. I grabbed him and put my arms around him, all the while biting the inside of my cheek to stop myself from losing it. I reassured him, he's going to be fine, we're here, trying to make him better. I haven't let him die and I don't plan on letting asthma win. I know those words are scary but the Specialist and I are taking good care of you. Calming your child when you feel like a bomb is about to explode inside yourself, is next to impossible. But as hard as it is, you have to make it happen even if that means biting your cheek so badly it bleeds. Later on when you've locked yourself in your bedroom alone, you can shove your face in a pillow and have a good scream. You do not let your child see or hear your fear. You don't get to be selfish with their chronic disease. You have to be strong for them.

I need to clarify something. Past entries may seem like I'm disappointed with the doctors. Sure there have been frustrations and disappointments but they aren't perfect, and they can't be, especially when they're dealing with imperfect chronic diseases. I feel so much love towards Calvin's Specialist because he's stood by us all these years and gotten us through the worst. He knows us, he cares and he's there 24/7 with his cell phone. He's the hero in our story, saving my child over and over again and complimenting me on several occasions for knowing my stuff. He has said I'm an honorary asthma specialist. Hearing a doctor tell you, you're doing a good job, is a huge relief. As a mother you stress practically every second about what you could be doing better for your child. Give them a chronic disease and the mother feels like a failure. 

To sum this all up, we've decided to put my plan into action for up to three months. We wait and we decide as the pieces fall. Calvin has finally been in a good place since mid-January, so this is a perfect time to play around with the treatment plan. In the meantime I'm trying to deal with the uncertainty, the risks to my decisions. This is not my forte, I like to be in precise control. I hardly let my guard down, I rarely enjoy our kind of normal because I've forgotten how to. Someday that will come back, but right now I'm haunted by the scares we've had in the past. When you've tried your hardest only to watch things fall apart in an instant... It takes a long time and maybe never, to recover from that terrifying feeling. So, it's hard for me to actually enjoy when the sun is shining in our world. Instead, I stand like a fool holding an umbrella in the sunshine, waiting for the rain. The rain that could be months away. This is my struggle and all struggles come to an end at some point. I am hoping for a happy ending, one in which he grows up strong physically as well as emotionally, from all he's had to go through as a kid. We deserve that happy ending. Only then, will I fold up my umbrella.