Zoe C’s Story
It was an unseasonably warm and lovely February weekend. A college friend flew in from Chicago for a brief visit, and we drove up in his rental car together to spend the night in Seattle. Earlier, our daughter had driven some 80 miles up to Ballard to spend Valentine’s Day with her boyfriend. We met up with them late Saturday afternoon in the lovely gardens near the Hiram M. Chittenden Locks, then spent a delightful evening wandering around downtown Ballard. The next day was equally enjoyable as we took in the beautiful display gardens of the 2015 Northwest Flower and Garden Show, wandered around downtown Seattle a bit, shared an exquisite meal together at Steelhead Diner, then returned to our vehicles and headed our separate ways. Little did we know that this wonderful, much anticipated weekend was to be the last weekend before everything changed.
Tuesday night, February 17, my daughter was on the phone, trying to set up a doctor’s appointment for the following day as we suspected she was developing a UTI. The consulting nurse advised us to go to Urgent Care that evening rather than waiting, so we did, heading over in our pajamas as we had both already gotten ready for bed. Zoe did in fact have a UTI, and around 10:45pm, we waited to get Zoe’s prescription filled. We were both tired, and I thought only about getting back home as I signed for the 5-day supply of 500mg ciprofloxacin tablets. Whenever I had picked up a prescription before, the pharmacist had always carefully gone over possible side effects to watch for. The only thing the pharmacist warned us about was that the tablets shouldn’t be taken with dairy, so I wasn’t worried about the twice-daily pills. While I was still at the window, Zoe said she felt nauseous, swayed, and crumpled at my feet. She was double checked at Urgent Care, then a second prescription was written for another 5-day course of Ciprofloxacin, and I wheeled her out to the car and we went home. I picked up the second round of Ciprofloxacin the next day. The “new” pharmacist reiterated that Zoe should avoid dairy, and added that Zoe should avoid the sun. Neither pharmacist mentioned side effects to watch out for, neither pharmacist questioned whether my 16-year-old daughter should be given this powerful drug. And like an idiot, I didn’t read the 4 sheets that came with the Cipro. In the past, the pharmacists have always gone over any potential side effects, so I assumed (again, like an idiot), since none were mentioned that the drug must be relatively safe.
At first, Zoe seemed to be improving—though not as quickly as in the past. She had an orchestra concert on the following Sunday, so she went to rehearsal, then went straight in her room afterwards to work on homework. She came out about half an hour later in tears, saying that everything was “so cold” that it hurt to touch anything– she had been attempting to complete an essay that was due the next day, but it hurt to type. My husband took Zoe into the ER. They returned around 3 in the morning, after multiple tests had been run. Her UTI had cleared up, but she was told to finish out the prescription. Zoe wasn’t getting better, and on Wednesday also had abdominal pain, so I took Zoe into the ER, where further tests were run, including tests for appendicitis. She was in severe pain, and was clearly in agony when they took the blood draws and put in IVs– Zoe’s veins had collapsed in one arm, and the nurse was literally moving the needle around in Zoe’s other arm to make sure the veins didn’t collapse in this arm as well. I can’t even imagine how painful this must have been– it hurt for Zoe to even be lightly touched at this point. It tore me up to see—and hear– ,y daughter in such pain. The AER nurse looked stricken too, and kept apologizing for adding to Zoe’s pain. Once again, all of the tests were normal. We were sent home and told to see Zoe’s pediatrician the next morning, and of course, to come back if she worsened. Once again we were told to continue the Cipro, even though her UTI was still gone, and she had already finished the original 5-day prescription 2 days before.
The next morning my husband was reading through the drug fact sheets when he noticed at the end of the sheets that EVERY SINGLE SYMPTOM that Zoe was experiencing was a potential side effect!!! Worse yet, it stated to immediately stop taking the Cipro if any of the side effects occurred. I couldn’t believe it– the ER knew all along what she was taking, the drug sheet was readily available, yet OBVIOUSLY, at no point did anyone bother to look into possible side effects– even after tests kept coming back as normal… I also couldn’t believe that I hadn’t thought to read through the drug sheets, especially when she started getting sicker. In the past, I alsway had read the sheets right away. But this time, the one time it really mattered, I hadn’t. I felt somewhat relieved as there was now an explanation to Zoe’s symptoms, but I was also afraid—had so many people—including me—dropping the ball on this—made my daughter dangerously ill? Would she be ok?
With the doctor’s ok, we stopped the Cipro, but it was already too late.
Things did seem to be settling down somewhat, though she continued to have abdominal pain and now had a persistent headache. On Friday, however, when my husband and I returned from work, Zoe was acting rather oddly, staring fixedly at the drain of the kitchen sink as though it was the most fascinating thing she had ever seen. The abdominal pain had never gone away, and now she also had a persistent headache, so it was off to the ER once again. She was admitted to the hospital late that night/early the next morning to undergo yet another round of testing, and this time for observation. I went into work, and my son went to a friend’s house after he got up, and was invited to stay and spend the night so that I could go to the hospital to visit Zoe. I got to the hospital, and discovered that my 16-year-old daughter now had the voice, speech patterns, vocabulary and behavior of a 5-year old. She was now also having extreme mood swings, cackling maniacally one minute, then weeping inconsolably the next. She was still having hallucinations, staring vacantly at a black spot on the wall, or exclaiming about how beautiful the light on the call button was. Too make matters worse, her persistent headache worsened to the point where she begged each nurse and doctor who came in the room to drill a hole in her head so it wouldn’t explode. The tests—this time for encephalitis, meningitis, … a brain tumor– were normal, once again. A psychologist was sent to talk to Zoe, and she was sent home early Sunday afternoon sporting sunglasses even inside as she now had a hyper-sensitivity to light, with a generic diagnosis of myalgia, only after we agreed in writing that she would see her pediatrician in the next day or so– and that she would see a “counselor.”
Zoe was mentally a 5-year-old for about one month. She also lost 20-30 pounds in a month’s time, and lost muscle mass, strength and flexibility. For a while we had to spoon feed our 16-year-old as she now lacked the hand-eye-coordination to feed herself. This. Was. Terrifying. We didn’t know whether our previously college-bound-straight-A student would ever recover, whether we would now need to arrange for at home care. We did venture out occasionally for orchestra and band concerts that she was now unable to participate in. She was also prone to anxiety and panic attacks now, had severe insomnia, and whenever she did manage to fall asleep she had disturbing, vivid nightmares (horrific car accidents with babies flying through car windshields, family members dying, friends committing suicide…).
Suddenly her mind just cleared. But then she became cognizant of the pain she was still in– the never-ending headache, continued abdominal pain, pain all over her body. She went back to school (she had missed a month and a half by now), but for only a class or two. She had managed to get through a week of classes, and asked to drive to school for the half day. (The school is less than a mile from us). Her goal was to make it through all of her classes. However, reading the text book in her first class ramped up her ever-present headache, so she walked to the school nurse’s office. Unfortunately, the long walk was painful and exhausting, and by the time I got to the nurses office half an hour later, Zoe had had a relapse. She was in the nurses office with a blanket over her head, singing to herself. I took Zoe to Urgent Care, and, after she complained of chest tightness, she was seen immediately– where she was tested for drug use because of how she was acting. No surprise, all of the tests that were run, including the drug test, were normal. Once Zoe’s headache subsided a bit, Zoe started coming back to herself so to speak. The school nurse, Zoe, and I concluded that perhaps when Zoe was in extreme pain, her body (and mind) retreated to her “safe place”– which happened to be the uncomplicated life/mind of a 5-year-old. For one thing, we had noticed that when Zoe’s headaches worsened or she was tired, Zoe’s speech slurred, and Zoe would experience “brain fog.” We got a wheel chair for use at school and other long “outings,” to preserve her energy, which definitely helped. She didn’t have another mental relapse, and had less “brain fog” as she wasn’t in quite as much pain.
However, Zoe was never able to catch up with all of her missed school work, and ended up dropping half of her classes. Due to extreme muscle and nerve pain, the same young woman who had driven 80 miles to visit her boyfriend a few months prior was barely able to drive even 1 mile to school. Even riding in the car for more than half an hour was now torturous, so Zoe’s long-anticipated college visits had to be cancelled. At first, Zoe was able to continue to participate in music—singing, and playing cello and marimba, though it was painful and exhausting. (Her cello had to be carried for her, though). Unfortunately it is now too painful to play cello. We are hopeful that she will improve and be able play cello with her orchestra by the next concert.
I’ve already gone on and on about the most harrowing part of Zoe’s story, so I will simply list the various symptoms that Zoe experienced after taking Cipro:
Extreme headaches, extreme tenderness in the ligaments and tendons, joint pain, muscle loss, muscle pain, peripheral neuropathy/nerve pain/nerve damage, extreme fatigue, extreme insomnia, disturbing nightmares, dental pain including constant canker sores, burning sensation, brain fog, anxiety, depression, slurred speech, difficulty remembering words, impaired memory, hallucinations, non-allergy itching, slower wound healing, food sensitivities, visual changes, hypersensitivity to light, tinnitus.
Compared to the hell of the February and March, (and April. And May), Zoe is much improved. For one thing, as of a month ago, she no longer uses a wheelchair. But she still has a long way to go.
No one should ever have to go through an experience like this. Cipro should ONLY be used in the direst of circumstances, and should be closely monitored when it is used!!!!!!!!