After entering the Pediatric ER with a seizure, being dosed with Ativan, and then going into respiratory failure, Maddi was rushed to the PICU. Jason and I were just frantic. When we got to the floor, we were told to wait outside while they situated her, and a Doctor would come and look for us. We waited for 30 minutes in fear, until someone came out to find us.
The attending, Dr. Sullivan, was typically the cardio ICU doctor, but was covering the Peds floor. He was the most amazing doctor I have ever had contact with. He was so knowledgeable and thorough. He wanted to cover all bases, because healthy 5 year olds do not suddenly start exhibiting extreme behavior and personality changes, and wind up on a respirator.
He ordered tests for everything. Infectious. Viruses. Weird unheard of diseases. He left no stone un-turned. Dr. Sullivan was the doctor who ordered the NMDA Receptor antibody test, and I am so grateful to him for that! Even my Pediatrician said: I’ve never heard of it! I would have never thought to order it! We did a CAT scan, MRI, EEG, blood work, and then there was nothing left to do but wait.
After the first few hours, tests started pouring in with negative results. Her CAT scan was perfect. Her MRI was perfect. Nothing that could explain the behaviors and symptoms we had been seeing. We sat there, powerless, watching our baby breath with the help of respirator.
After her MRI, they took her off of the breathing tube. She was disoriented and confused, but looked around and said: “Where’s Jaxon?” At that point, she had been on so many antibiotics for the last 36 hours, I was hopeful that maybe this was an underlying infection that was no being treated. That hope fizzled out as her good mood turned into a rage.
The nurses agreed that it looked like seizure activity. One moment she was fine, then she was unresponsive and acting out aggressively. It took 5 of us to hold her down.
At the end of the day, the EEG was inconclusive due to the amount of medications that she had been on. They could not determine if she was having seizures, and without the data to back us up, they discharged us to the Pediatric floor, and turned our case over to the Pediatric attending. Before moving to the step down unit, I met with the Psychiatry department. I knew this was coming, because they could not find an organic cause. After relating everything up to that point to the Psychiatry Resident, she turned to me and said: these are all markers of abuse.
I couldn’t believe what I was hearing?! Maddi being abused? You don’t think as a Mental Health Counselor that I didn’t automatically go there? I know I’m close to the situation, but I felt very confident in my screening of abuse with Maddi. I left that room fully expecting a visit from a social worker. What I did get, was a visit from the Psychiatry attending, who talked with Maddi, and after a 20 minute conversation, determined she was perfectly fine and that this case was not Psychiatric in nature…well duh…I knew that too. (The irony of this whole situation is that the Psychiatrist had recently transferred from Duke University in North Carolina. Duke is the only institute in the US that has a clinic DEDICATED to Anti-NMDA Encephalitis. He himself had seen and been apart of the treatment team of kids with NMDA!!!)
The first night on the step-down unit, Maddi woke up in a rage. I was alone with her, and I couldn’t control it. I had to call the nurses for help, which resulted with Maddi naked on the bathroom floor, refusing to move for over 30 minutes. They were able to coax her in bed, but not before she destroyed the room. From an outside, the episode felt like a really bad tantrum of a spoiled brat who was used to getting their way. Anyone who knew Maddi, and Jason and I as parents, knew that this was so beyond the realm of normal for our house. I suspect that this episode was reported as behavioral in nature, because the next morning we were visited by the entire team and told that there was nothing else they could do for us. And, I quote: “all the tests have come back normal. We can’t find anything. There are a few more tests pending, but frankly, I don’t expect them to come back abnormal. It would be very odd if they did, given the circumstances. Psychiatry has recommended PCIT (Parent-Child Interaction Training) going forward. We feel this is the least risk, with the most benefit.”
I sat there staring at the doctor as tears streamed down my face. They were sending us home with this nightmare. I didn’t know how much more I could handle. I hadn’t slept in weeks. I was afraid that Maddi would hurt herself, or me, or someone. I didn’t understand how a therapy such as PCIT would be helpful in diffusing Maddi’s rages. I didn’t understand how therapy was going to stop the seizure activity. I looked at him and asked to be discharged as soon as possible, and that we would find our own therapy. I was going to figure this out on my own. If these doctors didn’t want to listen to me that something was wrong, I would find someone who would.
After the Doctor left the room, Maddi became agitated and aggressive. Again, I couldn’t control her, so the nurses returned, and this time with the Doctors to show them this behavior. I still remember the smugness of the doctor as he told me: see Mrs. Rispoli, everyone needs help sometimes. You can admit you don’t know what to do. It’s obvious you don’t know how to handle this. It took everything inside of me not to loose control. I simply turned to him and said that I was fully capable of managing my daughters NORMAL behavior, but when she is raging or out of control of her emotions/body, there is NOTHING I can do except try and keep her safe. I was so angry. I couldn’t believe that they were passing this off as a behavioral/parenting problem. They were calling it Adjustment Disorder, NOS. Adjustment to what? Are they stupid? She didn’t even meet criteria. Just code for we don’t know what we’re doing.
I felt so let down by the system at that point. I was embarrassed and ashamed. These people had never met me, my husband, or my child, but they were quick to judge that we were not good parents, that we somehow must be responsible for Maddi’s decline in behavior. Her change in personality. Her lack of appetite. Her lack of sleep. Her aggression. Her seizures. None of this made sense. What could we do?
that’s the answer.
we were powerless, yet again, to do anything.
So we took her home, and she got worse as the days went on. Through the weekend, I resolved myself to the fact that we would see our Pediatrician on Monday. Just make it to Monday. I would say to myself.
That weekend I got the NMDA Receptor AB Serum tests. I could tell they were abnormal, but I didn’t know how to read the test, so I didn’t know what it meant. I searched the internet, and everything that came back filled me with fear and anxiety. So I let it be.
Saturday night, Maddi had another seizure. This time, Jason and I saw it before our own eyes. We called the ER, and the doctor told us that if she was stable and responding, that there was nothing more we could do. Sunday, she was quiet and lethargic, but Sunday night was full of aggression, and as Jason and I sat on the floor crying together, I feared our only option was to take her to be evaluated for a Baker Act (involuntary psychiatric hold). I knew that she met criteria for one, but I feared that they would give her medications to mask whatever was going on, and that the experience itself would be terrifying for her. So I prayed. I asked God for a good night. I asked that he would let Maddi rest, and in turn, us. He heard. Maddi slept 5 hours that night.
We had made it to Monday morning.