For years Bop has been one of those “sick kids.” When he was very young he seemed to catch all of the colds at his daycare center. When he was two, he had ear tubes put in. The day of his surgery was, by far, my hardest day of parenting. Unbeknownst to us, Bop had so much fluid in his ears that he had 60-70% (temporary) hearing loss. As soon as he came out of surgery, he could hear like he’d probably never heard before. And he freaked the F out. I was genuinely worried I’d break one of his limbs while trying to
contain console him as he came out of anesthesia after the tubes were placed.
Within months, there was so much pressure in his ear canals from more fluid accumulating that it pushed the tubes out. One day, when I was home with him while he was sick, his breathing changed. I called a nurse who told me to rush him to the doctor. He had pneumonia and, we’re told, will forever be at risk for getting it again.
When he was three, I was out of town when Scoot called and said Bop had a high fever. When I returned from my trip, I found his bed sheets covered with so much blood from the fluid draining from his ears that bleach couldn’t remove the stains.
Over the next two years, we began to build quite a collection of remnants of amoxicillin bottles in our fridge. It just seemed like he was constantly sick. During that time, we had him tested for allergies for a second time (through blood work, rather than skin tests as he’d previous had that were inconclusive) and learned he has some pretty severe allergies, including to trees and grass – two allergens it’s nearly impossible to avoid.
Some of the many bottles of amoxicillin that reside in our fridge.
Last year, when we’d get calls from school every 4 – 6 weeks saying that Bop was lethargic and had a headache, we’d chalk it up to bad allergies. Most of the time, he didn’t have a fever. He was just uncomfortable. Nothing a little Zyrtec couldn’t fix, right? I wouldn’t take him in for antibiotics unless I had reason to believe that he was actually sick, usually because of a fever or changes in his demeanor, rather than having stuffiness from allergies. When he did get sick, I thought it was because his allergies were so bad that his sinuses couldn’t drain and so would get infected. His pediatrician agreed this was a plausible cause.
This spring, when I realized that he’d been prescribed antibiotics six times in eight months, we decided to ask for a referral to an immunologist. I dug out the results of the prior allergy blood tests and started studying them so I’d have my questions prepared. I was mostly worried about the slight allergies to dogs and milk that his tests showed. Do we need to get rid of our dogs? He loves milk but should I stop letting him have it? I noticed there were tests other than those for allergens reported. Tests I hadn’t gone over with his physician.
One caught my eye. IgA <0.1. “Huh,” I thought. “I wonder what that means.”
A few clicks later and Dr. Google was by my side explaining selective Immunoglobulin A deficiency. I mentioned it to Scoot, who is well versed in my particular brand of hypochondria. He told me not to worry. I told him I’d ask the immunologist about it. Why wouldn’t his pediatrician have said something about this result? That means it’s no big deal, right?
I brought the blood work with me the next day. When the doctor looked the tests over he said, “And you know about his immunoglobulin deficiency, right?” I sat dumbfounded. “Um, kind of…I mean, his doctor never explained it to me. In fact, I just noticed it last night,” I replied.
The immunologist asked if my iPhone was locked as he reached for it. Confused, I fumbled with it, unlocked it and handed it back to him. He set my internet browser to http://primaryimmune.org. He said I could look there for more info. I asked where he got it from. “Which one of you [me or Scoot] had ear infections as a kid?” he asked. “I’ve had four sets of tubes,” I replied. “Go to your doctor. Get tested,” he said. He handed me seven different prescriptions for Bop, including nasal sprays, antibiotics, allergy meds, and rescue meds for the asthma attacks that are inevitable for a kid in his state. He suggested we start him on allergy shots and ordered a sinus x-ray and a return visit in a few weeks.
We went home and did more research. We learned that immunoglobulin A is an antibody that is excreted in the mucous membranes of the eyes (tear ducts), nose, mouth (saliva), and the digestive tract. Those antibodies fight infections. Immunoglobulin A deficiency occurs when someone does not produce those antibodies, causing them to be susceptible to infection. It is the most common antibody deficiencies. And it is genetic.
When we returned, Bop had gotten better and then worse. As soon as he was off his two week course of antibiotics, the sinus infection returned. He had also been to soccer camp where we learned that his grass allergies and his shin guards did not mix well. His shins were shredded from him scratching them. We were handed more prescriptions. Despair began to set in.
The immunologist urged us again to start allergy shots. We talked to Bop about them, explained that they’d help him “not be d’allergic to cats anymore” (his words). He/we decided to go ahead with the shots (which may take up to five years to finish). His immunologist also referred us to an ENT for evaluation for an adenoidectomy. It took quite some time to get scheduled (during which I was tested and confirmed to also have Immunoglobulin A deficiency as well) but when we saw the ENT in early August, he said he needed a sinus CT scan before evaluating Bop for a surgical solution to his chronic sinus infections. A few weeks later, we were told Bop was a good candidate for a balloon sinuplasty, turbinate reduction, adenoidectomy, and tonsillectomy. Though the surgery wasn’t urgent, the ENT explained, there is a good chance he’d stop being so sick if he had it and he’s in the ideal age range for these particular procedures. And cold and flu season is quickly approaching. In total, the four procedures would take less than two hours. It’d be handled in an outpatient setting. He’d be out of school for up to two weeks.
We slept on the decision. We conferred with his immunologist. We began to get clarity.
There are three distinct but related problems that are causing Bop to get sick so frequently: 1.) He’s got severe allergies. He’s now undergoing immunotherapy (allergy shots) for that. 2.) He has no antibodies to fight off infections. There’s nothing we can do about that. 3.) He’s got enlarged tissue in his ear/nose/throat that traps bacteria. Though I hate the idea of him having to undergo and, frankly more significantly, recover from surgery, the only way to address the anatomical contributors to his chronic sinus infections is by fixing his anatomy.
So what would life be like without the surgery? If history is any guide, it’d probably include many more calls from school to ask us to come pick up our sick kid, more sinus headaches and stuffy noses, and many more prescriptions for antibiotics. Plus, now that he’s been diagnosed with IgA deficiency, he’ll likely never just get a short course of antibiotics. Knowing his body isn’t naturally able to fight off infections, we want to save antibiotics for the severe infections, not just now but when he’s an old man. We don’t want him to continue having eight prescriptions for antibiotics each year.
We explained the options to Bop. We told him he can put a mask on his face, go to sleep, have doctors scratch his throat and tickle his nose to try to keep him from getting sick. We told him his throat would hurt for a couple weeks but that he’d get lots of popsicles and ice cream. We told him he wouldn’t get to play soccer for a month or so. We told him he’d miss school. And we told him that he could choose not to have surgery and that maybe he just wouldn’t be as sick as he was last year. He hates being sick. His sinus headaches have affected his quality of life. He may only be five (six on Friday) but he just wants to be done with all of the suck that is chronic sinusitis.
So next Monday, Bop will undergo four procedures to try to rid him of the misery of chronic sinus pain, pressure and infection.
We won’t know for some time whether we’ve made the right decision. I can only hope that after my baby endures the discomfort of the next few weeks, he earns himself some much needed long-term relief.