I never really paid attention to the sign on the door of my son’s daycare stating that a child in the facility had hand foot mouth disease, a highly contagious viral illness occurring mostly in children, characterized by a persistent fever and a rash or blisters on the hands, feet, and in/around the mouth. I’d never heard much about it before, therefore, it must not be a big deal.
My 2 month old son, Lincoln, ended up in the emergency room on Saturday, December 22nd after a distressing phone call from the on call nurse at his pediatrician’s office. Lincoln had been running a mild fever for a few days and sleeping worse than normal, so we gave him age-appropriate doses of Tylenol as was recommended by his pediatrician after he received his first round of vaccines in November. His only other symptoms were a little congestion and a very mild dry cough, so we didn’t think much of it, but decided to call anyways since he was so young.
Did you know that if you give your less-than-3 month old infant Tylenol, that makes you both a bad parent and stupid? That’s not exactly what the nurse said, but it was heavily implied. She very urgently told us that you’re only supposed to give young babies Tylenol if they’ve had their vaccines within the last week or so. She then told us that we needed to go to the nearest emergency room and admit to them what we did. She said that a fever in a young baby can be very very serious (we knew this, but he had also recently started daycare and had been bringing home all kinds of crud over the last several weeks. Hello, 24-hour stomach virus).
So with me in tears thinking I had just poisoned my baby and let a raging infection go unchecked, we packed up and rushed to the ER. When we got there they got us right in. Sure enough, despite the doses of poison we had been giving him, Lincoln displayed a mild fever.
After waiting for the typical forever that ERs tend to take, and Lincoln enduring a flu, RSV, and strep test, as well as a chest x-ray, the doctor eventually came to the conclusion that our little survivor had a simple upper respiratory infection, and that we were perfectly fine in giving him Tylenol, and in fact could increase the dose even further. $350 later, they sent us home and told us it would pass.
Now, at this time Lincoln had not yet developed the telltale rash or blisters of hand, foot, mouth on his hands, feet, or mouth. Before the ER trip, we assumed all he had was an URI in the first place, so in our minds this just confirmed it. It would eventually pass, and we would go back to living our lives, healthy and as well rested as could be expected.
Over the next several days, Lincoln’s sleep kept worsening and his fever kept persisting. As low grade as it was, we were still worried. Meanwhile, I had come down with a sore throat and congestion myself. We decided to call the pediatrician to follow up and see if there was anything else going on. My husband took him in the following Friday, and the pedi immediately called hand, foot, mouth. He pointed out a few barely noticeable spots on his hands and feet, as well as around his mouth that we had mistaken for baby acne. This also explained Lincoln’s lingering fever.
My mind immediately flashed back to the sign at daycare. Any kid with this illness could have slobbered, pooped, sneezed, or coughed on something Lincoln touched and given it to him. As disgusting as that thought is, at least we now had a definite answer, and as with most viral infections, all there was to do was wait it out.
The weekend came, and Lincoln’s fever rose less and less. He seemed to be feeling perfectly fine again, although I ended up having to nurse him all night in the guest bedroom. He had not slept his usual 7-8 hours straight since the week before. I was scheduled to work the weekend, so I got up Saturday morning at my usual 4:30 feeling exhausted and worse than Friday. My throat was very painful and I had developed a dry cough. In healthcare, if you call in on the weekend, you’d better be dead or dying, so I coffee’d up and pressed on (besides, I had used up most of my PTO on maternity leave). Working the weekend in a hospital laboratory like mine means I work by myself. In order to get all of my tasks done, I have to run around the whole lab all day performing maintenance procedures, running QC, and resulting patients, so by the time I get off work at 3:00, I’m ready for a good long nap (a pipe dream with a baby). That night eating dinner, I wondered to myself why it felt like I was eating fire ants. My throat stung like I had never felt before, even water made it burn. This was unlike any sore throat I had ever had. My husband suggested maybe I caught hand, foot, mouth too. I thought not; Lincoln hadn’t seemed nearly as uncomfortable as I was. That night I ended up having to nurse him until morning again. Sunday was progressively worse. By Tuesday, New Year’s Day, it peaked, and lo and behold, the spots appeared on my hands and feet- and they were significantly worse than Lincoln’s. Unfortunately I had to work by myself again. I could barely open containers or write, my hands hurt so bad. They had a mixture of a rash and blisters. My feet felt like I was walking on glass. My throat stung from anything I ate or drank, and I was coughing a lot more now. I ended up having a low fever. The worst part came when I tried to pump that mid-morning.
It may as well have been tomato juice.
The pain and bleeding that came with pumping was breathtaking. Nursing Lincoln had me practically doubled over and sweating. I had bleeding cracks and peeling skin that hurt so bad that I decided I just had to live with the engorgement and give Lincoln formula. There was nothing I could do and it was the worst. I called my doctor, and when I told her Lincoln and I had hand foot mouth, she said,
“Oooooooooh… It’s going to be a rough few days for you.”
Great. Thanks. I knew it was bad, but hearing my doctor not even try to sugarcoat it made it seem so much worse. She prescribed me a special ointment that had to be compounded at a particular pharmacy in town. It contained an antibiotic, antifungal, and steroid that was safe for both Lincoln and I. I applied that after every feeding, but it didn’t help. The pain, cracking, and bleeding kept on. Healing did come with time though, and thankfully it didn’t take more than about a week to get back to completely normal.
Though I eventually healed, my body wasn’t done with me yet. Several days later my finger tips peeled raw and sheets of skin came off my feet at a time. It was like a train wreck, I couldn’t look away. It’s a month later and I still have significant peeling on my feet. Hand foot mouth disease is quite a bit more effective than a pumice stone!
Lincoln’s sleep habits have yet to recover. He’s still waking 3-4 times in the night, every night, and I will occasionally have to nurse him until morning in the guest room. Unable to find a solution, I’ve settled on the theory that hand foot mouth triggered some sort of early sleep regression that just hasn’t passed yet. My husband and I are getting no sleep whatsoever, and some days I feel like I’m going to end up on the third floor of my hospital where the behavioral health patients are treated. January 2019 has been the longest, most ridiculous month I can remember ever experiencing. I’m still holding out hope that Lincoln will go back to sleeping again, and we will get to the point where we can look back and remember the crazy moments that made Mom lose her mind. Until then, I’m making peace with the fact that I am a functioning zombie, and I will always be a little less sane than I was in the year 2018.