Our son had a blissful first year of life with no medical problems whatsoever; little did we know that the next two years would be a different story. Although we did not endure even a fraction of what some families have, our experience affected all aspects of our lives while it was going on. It is my hope that this piece is useful to other parents facing medically-related sleep problems and may even help spare them some of our troubles.
When our son started daycare at 14 months, the expected series of first colds began, but these led to a series of painful ear infections. It seemed he was always on medications or treatments to deal with their side effects. Eventually our doctor recommended tubes for his ears, and we agreed. The surgery to put in tiny tubes that would allow the mucus to drain was outpatient but not altogether easy, particularly the fasting for hours before. Going under general anesthesia wasn’t hard (although scary to witness), but when he “came to,” he thrashed and screamed for several minutes. I’m still glad we did it; the tubes stopped the ear infections. He had just one or two others, and then the tubes facilitated administration of drugs directly to the infection, rather than subjecting his tender gut to more antibiotics.
But our trials weren’t over. Even after the ear infections stopped, our son had dark circles under his eyes, snored, and had difficulty waking up from naps. He woke up several times each night in distress. I read everything I could and followed everyone’s advice. We would let him cry and cry for hours in response to charges that we weren’t allowing him to self-soothe. This is something I now regret; he had a medical condition that needed attention. But we didn’t know.
I suspected that it was a cat allergy causing it, but because we loved our cat, and because our allergist at the time didn’t think it would make any difference to get rid of our cat, we didn’t explore this option until much later- something I deeply regret now. Meanwhile, we put an air purifier in the room, and our allergist prescribed a steroidal nasal spray that we administered daily. Regular antihistamine didn’t do anything for him because his primary symptom was congestion, and our allergist didn’t recommend decongestant drugs. The spray is unpleasant (I did it to myself to see how it was – not like just spraying saline), but our son was so miserable that he didn’t fight us. My colleagues in medical research confirmed that the steroid wouldn’t hurt him, but it wasn’t really helping.
We tried a difficult month of no dairy (which meant no dairy for me either as I was still nursing), with no change. We also had a humidifier going nonstop in his room to help him breathe (recommended by the doctor), but I now suspect that this also was a contributing factor, given that it was a cheap one that didn’t filter the water (and we just used tap). It left a white residue on everything – why it didn’t occur to me that this was also in our boy’s lungs, I’ll never understand.
The doctors suspected adenoid trouble, so we first got an x-ray of his head which revealed that his adenoids were indeed a bit larger than normal, but not enough to be a clear justification for surgery. We were referred then to a pediatric ENT who recommended a sleep study before doing surgery. Our son was exactly 2 1/2 yrs old.
The sleep study was a traumatic experience (maybe more for me), even though the staff at the hospital were wonderful. They hooked up literally dozens of sensors with a slew of wires to his head, face, and foot. We distracted him with a movie while they were being put on. I tried to nurse him to sleep, but it was difficult to navigate with all the wires that had to be untangled more than once. He hated the sensor on his foot and on his upper lip particularly. There was a cot for me to sleep on in the room. Needless to say, it was very difficult for him to sleep- he kept waking up and crying. I was worried that they wouldn’t get the data they needed – a minimum of 2 hours uninterrupted. Fortunately, they were able to get what they needed and reported that he “stopped breathing 9 times/hour.” In other words, he had apnea. However, in hindsight, I believe that a great deal of this was likely caused by allergy-induced congestion. The apnea was bad enough to warrant surgery, according to the ENT, so we agreed. I kept asking what role the allergy was playing, but no doctor would agree that it was related.
We had the surgery done just weeks after the sleep study. They took out both his adenoids and tonsils. The surgery didn’t take long, but was still an agonizing wait. Again, coming back to consciousness after the general anesthesia was hard, but nothing compared to the night that followed. Both my wife and I stayed in the hospital room with him during recovery that night. When the drugs used during the surgery completely wore off, it was clear to me that he was in terrible pain; he didn’t even want to nurse. I had never heard him cry that much, or in that way. I begged the nurses to do something, but they said that it was important that they didn’t drug him too much, to be able to monitor him this first night.
Somehow we made it through. I have since heard from another parent who let her child eat solids (spaghetti) after this procedure and then regretted it later when the child woke screaming in pain. I also heard from parents who didn’t follow the advice of keeping the meds for pain constant, i.e., they thought the child was doing so well that they stopped them prematurely, and the child suffered terribly. According to our doctor, stopping pain medication too early is the number one mistake parents make, so we were careful not to.
After the surgery, our son wouldn’t tolerate the nasal spray. He would scream like he was in pain if we administered it. The sleep problems persisted. We got a new allergy doctor who said if you love your child, get rid of the cat. Fortunately, our neighbor was happy to take him. But as the first allergist said, it was many months before our home was allergy-free. We had misunderstood something our heating guy had said a year before, and we had had no filter in in our heating system for over a year. I am horrified by this fact in retrospect, especially now that we change them seasonally, and I can see how much junk they catch (not to mention everything I can’t see). Needless to say, filters helped, as did our good vacuum, and time.
And yet, our now three year old still wasn’t sleeping. By this time, our doctor said that it was behavioral. Now that there was no medical cause, the things that we had tried before to get him to sleep might work. But we no longer had the stomach to let him cry for hours, and he was certainly old enough to get out of his bed. A specialist gave us instructions as to how to gradually teach him how to sleep again, by our taking turns sleeping on the floor next to his bed, silently replacing him if he got out, with each night moving ourselves farther away. After a failed week of this we tried it again. It took three weeks total, but it did work.
Looking back I wish I had been more firm about the cat, someone had realized about the humidifier and also lack of filters in the heating system of the house. I also wish that we had gotten more medical opinions, which may have resulted in addressing the allergy aspect more thoroughly first. We will never know if we might have avoided surgery.
Now our son is seven and sleeps fine. He has no memories of the ordeal we went through, for which I am grateful. Nor does he have any phobia about doctors or hospitals, which I credit the wonderful facility and staff at Children’s Hospital. My heart goes out to any family going through this; it is my hope that our story be helpful to you.
*I would like to thank my wife Fran for editing this (and all of my) post(s).