A descent into madness.

Life is a constant dance on the razor thin edge between life and death, but there are times you are more acutely aware of this. Times when you realize it’s not you who controls much of anything. Times when it doesn’t matter how much you think you’re doing the right thing  - there are just some things you can’t plan for or even possibly imagine until they’re happening to you. This is true of marriage and birth and loss. You can hypothesize all you want but until you find yourself there, it’s then you’ll say, “Oh, I didn’t know much of anything.”

Nixon Wilder was born happy. If you follow me on Instagram you might know this already - or just watch the video in my previous post for a little example. He is full of joy and laughter and loves to play and explore. He is smart, his memory is shockingly accurate, and he has the same buoyant spirit as his dad – he just loves to be part of whatever is going on. Loves to tell stories. Loves to sing and dance and play air drums. Loves to ride his bike and play with the neighbors and go to the park.

On Nixon’s third birthday, just a couple of weeks ago, he started a low grade fever. I didn’t think much of this because Rozlyn had one a couple of days prior and I just assumed he was picking up whatever she had. Since it was low and he seemed to be doing pretty well we decided to go ahead with his birthday festivities and he absolutely had a blast. We planned a red balloon party, per his request, and at the end of the night he said, “I like my balloon party!”

But the next day his fever started to tick up a little bit higher and by Monday, his fourth day of fever, I decided to take him to his pediatrician. He was prescribed 10 days of amoxicillin for pneumonia, the same antibiotic his sister was on for a double ear infection, the same antibiotic he took as an infant for his own ear infection. He had his first dose that evening. His fever ticked higher the next day while we waited for his antibiotic to kick in and handle his sickness.

Wednesday morning I went to the gym but Aaron texted me on my way home and asked about my ETA because Nixon was bawling and only wanted me. When I got home, he quickly calmed down and we just figured he didn’t feel good. Who doesn’t want their mom when they don’t feel good? But his fever raged that day at 103 and 104 so I made an appointment for his pediatrician again. At this point, Nixon didn’t want to take his antibiotic anymore. “I don’t want to take that pink medicine,” he would say. But we bribed and begged and got him to take it thinking it would help.

His fever kept up for two more days, topping out at 105, but I gave him ibuprofen that morning for what seemed like the 100th time and his fever seemed to stay away. Aaron and I had plans to go glamping with all my siblings and my parents were going to take the kids. If the fever didn’t stay down, we wouldn’t have gone, but since it did and he seemed okay, we decided to go because we had been planning this outing with my siblings for nearly 8 months. That night around bedtime, I checked Nixon’s room monitor on my phone and saw that he was bawling while my mom tried to put him to bed. I felt terrible. I should have been there. He just kept repeating, “I want mama. I want mama.” But my mom said he eventually calmed down and fell asleep.

The next morning he wouldn’t get out of bed. This is not normal for my son. But he screamed “GO” and threw a fit anytime someone tried to go in his room so my mom just let him stay in there while she waited for Aaron and I to get back. He laid on his bed for another hour before he was calm enough to let my mom come in. His fever was back up to 100.7 that day and he was still laying around but he started to whine and cry and scream a lot. I figured it was because he was still not feeling well and was mad that I wasn’t there for him the night before so I took extra care to be with him and try to make it up to him. But it quickly became clear that it wasn’t just separation anxiety.

Over the next two days, we watched our son seemingly disappear. This was now the 7th day of his antibiotic. He would wake up okay but then immediately fall on the floor and fly into a fit of rage. He would scream uncontrollably and ask to “get up” because he wanted me to hold him and he wanted me to hold him nearly 24/7 in those days. He would ask for something like a cup of milk but when I gave it to him, he would bat it away and say he didn’t want it. He made irrational requests that made no sense like not wanting me to breathe near him - “Don’t blow on me!" he would say. He didn’t have any tears, he would just stare blankly and scream ‘NO’ over and over again. He was violent, clawing at my face and my neck and if I held back his hands, he bit my shoulder. He would throw things -  cars, toys, anything to actually try and hurt you. You could see in his eyes he was deliberately trying to hurt you. Anytime he would speak, he would speak in babytalk, “No, mama.” “No, dada.” He would scream at nothing as loud as he possibly could and arch his back and kick his legs over and over again. He would hit his own head with his hands and say, “Don’t look at me! Don’t look at me!” He didn’t want Aaron to come near him. He didn’t want to go outside. Aaron and I kept saying, “It’s like he’s a completely different child.” The best way to describe it is like he was having a night terror, but during the day, and there was no way to calm him down.

These episodes of rage would last up to two hours before he was calm, but even in his calm state he was almost catatonic. He didn’t laugh. He didn’t smile. He sat quietly but made no noise, no sound effects playing with his cars, no talking to his sister, no singing. He said no to anything you asked him. He didn’t want to listen to any music. And you never knew what would set him off into his next fit of rage.

On Labor Day, Nixon only had a few moments where he wasn’t screaming or crying or raging at Aaron and I. He was on day 8 of his antibiotic. We were on day three of managing near constant episodes of what seemed like psychosis. We knew this wasn’t our child. It was like he was possessed – very clearly not in his right mind. He was not our happy, sweet boy. I was wracking my brain for what could be going on. Did his fever affect his brain? Several years ago, I read the book, Brain on Fire and when my son was clawing at me and screaming, it’s all I could think about. His brain seemed to be on fire.

We decided to take him to Urgent Care. There was clearly something wrong. We got checked in by a nurse who listened to our story and then sort of off-handedly said, “I read medical journals for fun and they say it can sometimes cause behavior changes. This kind of seems like what happened to my daughter when she was on augmentin. She was like a different child.” We kept this in mind, especially when the PA we saw said he was okay and it was just regular 3 year old ‘oppositional defiance’. I didn’t believe her. I had seen my son defiant. This was not regular. This was not my son.

After another night of rage trying to get him to sleep, Aaron and I started looking up whether or not amoxicillin could cause behavior changes. There wasn’t much information to be seen but Aaron found this forum of parents from several years ago saying exactly the things we were experiencing. Their children were completely different human beings while taking amoxicillin. Not many of the posts said anything about their child going back to normal after the medication – they just detailed what happened while on it. So we weren’t sure what would happen but we knew we had to stop giving it to him. We just had to wait and see and pray that our child would come back to us.

After several days of managing these rages, I stood in the shower and just cried and repeated outloud, “Dear God, have mercy on us, please give us our son back.” It’s all I could muster. It’s all I could say. I had nothing else. Dear God, have mercy on us, please give us our son back. It makes me cry now even thinking about it. We were in hell. Our sweet boy who loved to pray at dinner and finish the prayer at night, he didn’t want to pray anymore. He didn’t want me to read his verse hanging on the wall. I said, “Jesus loves you,” and he screamed at me, “NO, HE DOESN’T!” It felt like a spiritual attack. It felt like demons. It makes me cry to think about what was going on in Nixon’s little brain and body in those days. I mean I really do feel like the man in Mark 9 who asks Jesus to heal his son of a demon that threw his son on the floor and made him convulse.

I distinctly remember one morning, two days after we stopped the medicine, he came out of the bedroom in the morning to find me in the kitchen. He walked up to me, smiled like he normally would, and I said, “hi bud” and his face changed immediately and he fell on the floor and screamed “Get up! I said get up!” and it started another two hours of trying to calm him down. But I feel like he woke up and when I spoke to him, it’s like he realized he still wasn’t better. I don’t know if my face looked different or my voice sounded different to him or he couldn’t understand me or what. I don’t know. But it was like he knew he wasn’t better. And I don’t know if I’ll ever forget that look on his face. It was absolute despair.

The third day after we stopped his antibiotic, we thought he would be better, but he was still flying into occasional rages. When he talked, he only spoke in a whisper. At one point, he asked me, ‘What’s that sound?” and I said, “What sound?” He said, “Sssssssssss”. But there was no sound. Something was obviously still affecting him. What gave us hope was that between the rages, we saw bigger glimpses of who he used to be. There was more space between the episodes but because he was still having them, we took him back to his pediatrician. Words like “neurologist” “schizophrenia” and “encephalitis” were being thrown around and it felt absolutely surreal. We decided to do a blood draw to see if it would tell us anything about what was going on and to possibly (hopefully) rule some things out. They ran a CBC, they checked his thyroid, they checked his platelets and metabolic channels. They checked his inflammatory markers and checked for any toxins and lead. Aaron and I had also read about a syndrome called PANDAS which causes behavior changes after a strep infection so they checked that but his blood revealed he has never had a strep infection. So his blood work came back completely normal. Perfect, even. Nothing to suggest that anything was wrong other than what they call “antibiomania” or basically an antibiotic-induced psychosis. We asked how long the medicine would stay in his system and his pediatrician suggested probably three to four days. We were on day three.

Nixon came back to us on Friday – day four. He was timid and shy and quiet, but he wasn’t raging. He didn’t want to do any of his normal stuff yet, but he wasn’t screaming or clawing or throwing a fit. When he talked he would confuse his words. For example, when he asked for some floss he said “sloff” which maybe isn’t that weird for some kids, but for Nixon who has been speaking for the last two years very clearly, this was weird. It seemed like he was coming out of a thick brain fog. That afternoon, he asked quietly for me to play a song he heard on the movie ‘Airplanes’ and he silently air drummed in the backseat while we played it. It made me cry. He was coming back to us. A week after stopping the medication, Nixon was completely normal. You would never know the actual hell we all went through the week prior. I keep praying that if he saw or heard or experienced anything scary in those days that God would erase it from his mind. That he would just completely forget. Nixon still seems to be more timid than he was before - more quick to cling to Aaron and I - but he is otherwise back to normal.

In the days since, Aaron and I have talked about all we were experiencing internally and how our thoughts in those days were similar: our dreams for our son, our dreams for our family were dying in that week. If this was our new reality, managing psychotic episodes, it changed everything. Would he go to school? Would we just be managing doctor’s appointments or medications or therapy? We both had the thought that we couldn’t have another baby like we planned because Nixon was taking every waking ounce of energy we had. Everything shifted in those days and it seemed like nothing would be the same. It felt like our son had died and this new person was requiring everything we had in us.

But God heard. He had mercy on us. And he gave us our son back. I cannot even begin to utter enough praise.

Amoxicillin is prescribed millions and millions of times per year. From what we’ve read, this is a very rare reaction and I think most doctors are hesitant to say it’s even a possibility but our pediatrician said it’s listed in the literature as a possible adverse effect. So we wanted to share this story so that if you do experience the same thing, you can know you’re not alone. You can know you’re not crazy – you’re not going crazy. Your child is not disobedient or experiencing “oppositional defiance.” I don’t know what was going on in Nixon’s head but you can read about a 50 year old man who had the same thing and experienced hallucinations, thoughts that he was hearing from God, irritability, and delusions. Yikes. The chances of this happening to your own child are small, but they are real. And just like anything that happens to me - marriage, miscarriage, birth, loss, grief, and now madness, I’m here to share with you so you don’t feel alone and you might have some words for your own experience.