Meningitis Survivor (15 yrs old)
I consider my son Brett’s battle of meningitis to be one that needs to be shared due to the ups and downs and the mystery of its course. If telling Brett’s story can convince at least one person to be vaccinated against this illness, than I will feel like I accomplished my goal.
On Brett’s 15th birthday last April, he came down with a headache. Since he spent the night with several buddies, I didn’t really have any real worries about it and gave him some Motrin. The next morning he wanted to stay home from school, saying he just didn’t feel good. I again gave him more Motrin and left for work, telling him to call me if he needed me. By mid-morning Brett texted me, telling me he felt even worse. I called my Mom, and asked her to bring him up to have the pediatrician I worked for take a look at him. When I went and told my boss he was coming, I told her I really didn’t think it was anything other than the flu. When Brett got in to see Dr. Doshi, I heard the description “it feels like a bomb going off in my head.” Brett clearly had a stiff neck at this point. Dr. Doshi sent us to the emergency room, telling me we needed to get this investigated.
Upon arriving to the emergency room, the ER Doctor wasn’t sure what to think, since Brett wasn’t presenting with the classic high fever of meningitis. In fact, he had no fever at all. He did tell us that a virus they were commonly seeing did cause the neck glands to swell, mimicking meningitis, but they hadn’t had one test positive yet. None the less, a spinal tap was ordered.
“Your son has meningitis.” Those words from the Doctor came as a complete shock a few hours later. I always thought meningitis was swift and deadly so I felt panic set in. But we were assured it was of a viral origin, as the bacterial slides came back negative. It was explained that he could fully recover at home in 7-10 days. We did take Brett home and counted our blessings that he had only the viral form.
The next morning, Brett got drastically worse. He was unable to walk a straight line, and told me everything was spinning. I immediately took him back up to Dr. Doshi, where she admitted him to the closest hospital. She was concerned that he was dehydrated and that an overnight stay in the hospital being pumped with fluids should help. But it didn’t. As that first night went on, Brett still kept getting worse. In the middle of the night he needed to go to the bathroom and almost fell getting in there. Brett was a good six foot tall and only days before had pitched at his team’s baseball game, leading them to victory. It was hard to believe he was so weak so soon.
As the next morning set in, it became obvious Brett was only getting worse. After conferring with several doctors, it became evident that Brett needed the care of a bigger hospital and was transferred via ambulance an hour away to a children’s hospital. The first few days Brett seemed to stabilize, although with that being said, he was very weak and unable to get out of bed. He also had not eaten anything solid in almost a week. After no improvement in the five days since being transferred, the doctor ordered another spinal tap in hopes of getting answers. It was Easter Sunday of all days, and Brett was wheeled into a room where his second spinal tap was performed.
As the week went on, Brett was still confined to bed and not eating. All we could do was to sit in a dark, quiet room while he slept. The only sounds were the occasional beeps of the monitors. The latest testing showed no real answers. After being there for eight days, Brett woke up on and was having double vision. When I tried to talk to him his eyes were unable to focus on me. It was then a rash began appearing, as well as his vitals were now setting off the alarms like sirens. We had a flurry of activity from intern teams, to infectious disease teams, up to the director of nursing in our room staring at my son and the monitors. No one could give me any answers as to why this drastic turn of events was taking place, and no one seemed to know what to do about it, accept rush him in to the ICU unit, since up until that point, he had been on the regular pediatric floor. Within an hour of being there a third spinal tap was performed, as well as Brett being rushed down for an MRI of his brain, the second one in less than a week. The only concern at that time was that one of the slides picked up a bacterial contaminant, but further testing could only rule it as inconclusive. The next morning Brett got even worse. By evening he began to hallucinate, taking several people to hold him down. After a few hours of hallucinating, he became silent, and stopped responding at all. The Critical Care Doctor was called in around two in the morning, and he ordered an emergency CT scan of the brain. He was concerned that Brett would not follow commands such as squeezing fingers or felt no stimuli when picking up his neck. In fact, when the Doctor did pick up Brett’s neck, he looked like a limp rag doll!
“Your son has the onset of encephalitis, or swelling of the brain”. The results of the middle of the night testing showed Brett’s brain was beginning to swell. Yet, despite of having his blood drawn around the clock, countless doctor consults and testing, no one could explain why the turn of events. It was like battling the unknown. After all, one is supposed to get better in the hospital, not worse! The next morning the decision was made to insert a PICC line above Brett’s heart and start antibiotic therapy. It was shortly after that decision that Brett started to make a gradual improvement throughout the course of the day. The next day Brett had his fourth spinal tap as well as yet another MRI of his brain. Once the antibiotics were started, Brett was showing improvement on the latest rounds of testing. Over the next couple of days, Brett emerged again. He was very weak, but up and talking. He was able to eat small bites. He needed physical therapy to help him build up his strength to do the simple things like walk or even hold a fork, but he was improving.
After 4 MRIs of the brain, 4 spinal taps, 3 CT scans of the brain, a 25 pounds weight loss, 15 days in the hospital that included six in the ICU and being transferred by ambulance from one hospital to another, Brett came home. He spent an additional four weeks at home recovering, and it took most of the summer for his strength to fully come back. Next month will not only mark a year since Brett fell ill, but also his 16th birthday, which he can now celebrate fully recovered.
I can’t say enough how important it is to get the vaccine. Brett’s meningitis was labeled as viral because the bacterial agent could never be identified. I have been told that the fact Brett got the vaccine may have masked the agent and that’s possibly why it never could be proven how or where it came from. The one thing I have been told, and I stand by, is that the vaccine he had a year prior saved his life. As with any vaccine, one may still get the illness, just a milder form. Although Brett’s illness was very severe, it was very mild compared to what I think of what could be. Brett may not be here.