The early stages

Maddi started a public VPK program in July 2015. At the beginning, she loved it! She enjoyed getting ready for school each morning. She’d run into her classroom and greet her teacher cheerfully! She loved learning, and absorbed everything that she was taught.

In early October 2015, Maddi started to have problems in school. Her teacher reported that she would struggle with focusing and following directions. Redirection or correction would lead to a tantrum, which always landed her in the front office and a call to me.

Jason and I began to grow frustrated, so we  met with her teacher multiple times as we tried to help Maddi adjust to being in a classroom. At the same time, her behavior started to change at home. She became defiant and demanding. She would tell us what to do with such vigor, as if she really believed she had control over us. She would yell in our face when spoken to. She refused to compromise or discuss alternatives. No typical behavior strategy worked. The charts. The positive reinforcement. Consequences. Ignoring. Nothing. Jason and I settled into accepting it as a part of transitioning to public school, and tried our hardest to model respectful communication at home. Maddi continued to struggle at school, but was able to adapt, and the calls home became less. At the same time, we entered the holiday season and our household became very busy. We took a Family trip to Disney World for 3 days in early December, followed by Christmas, then celebrating Jaxon’s first birthday. Jason and I developed a system of managing her disrespectful behavior, and for a time it seemed to get better.

In early January 2016, my Dad, or Maddi’s Bampa, became very critically ill. His illness resulted in a 32 day hospital stay and the loss of his left foot. Our family was so preoccupied during this time, that we didn’t notice Maddi’s behavioral symptoms start to get a little worse. She became overly emotional, crying sometimes over nothing. Her defiance and demanding attitude returned, and everything seemed to be a fight. She would throw huge screaming tantrums in the mornings before school. When we would talk to her, she would tell us that she didn’t like school and that the kids were too loud and hurt her ears. She had never been particularly sensitive to sound, so that was surprising. We relayed these conversations to her teacher, who assured us that she was managing Maddi in the classroom. We later found out that Maddi was being disciplined and sent to the front office at the same rate she had been in the beginning of the year, we just didnt know.

Everything seemed to come to a head around Easter. Her older brother and sister came down with some mysterious illness that resulted in a week long fever, sore throat, etc. Maddi never exhibited any symptoms, but at the same time we noticed she was coming home with a full lunch box and refusing to eat dinner most nights.

This was the first red flag for Jason and I that something was seriously wrong. We’ve always worried from the beginning that Maddi ate TOO much, now she’s refusing to eat at all?? At the same time, she started struggling with sleep. She would cry every night at bedtime, despite our routine. A kid that once went to sleep at 7:30pm, was now pushing bed time back to 9-10pm. She’d wake up multiple times a night, and would be irritable and cranky in the morning. During the day she would act sad, be weepy, and cry excessively over nothing. I started to suspect that maybe she was depressed, and we talked about finding her a Therapist. After another week of the same behaviors and her sleep continuing to escalate out of control, we brought her to see her Pediatrician.

I’m very thankful that I have a good relationship with our Pediatrician. She agreed that something was just not quite right, and sent out a myriad of referrals to try and get to the bottom of whatever was going on.

The next day, her Pediatrician sent me a messaged and suggested the diagnosis of PANS/PANDAS. PANDAS is also a collection of Neuropsychiatric symptoms, but typically after a Step virus. Her brother and sister were just sick, so off we went for blood work to see if this was the cause. If it was, then antibiotics should resolve these symptoms, and boom, we could get back to normal life!

During the week and half that we waited to figure out if Maddi qualified for the PANS/PANDAS diagnosis, she quickly developed aggressive behavior. She went from excessively crying, to basically beating the crap out of us. Up to this point, Maddi had never hit another person before, now she was taking swings at us, slapping, slamming doors, and throwing things.

She would wake up suddenly multiple times per night, get up, slam doors, throw things, and just be inconsolable. There seemed to be no trigger, and we felt like we were walking on egg shells.A call to our Pediatrician indicated that the lab had lost some of our results, and that we would need to complete them again. She went further to call in a prescription for Azythromicin, hoping that if this was PANS/PANDAS, Maddi’s symptoms would clear up fast.

The Tuesday night of her first hospitalization, we started the new nighttime dance. She’d go to bed, fall asleep, and wake up 45 minutes later, crying, irritable, and unable to fall asleep. We fought with her to go to sleep for about 3 hours, before she was able to drift off again. At 11:45pm, as Jason and I settled into bed, she woke suddenly and started to slam the doors in the hallway. We went to her, and she was just in a blind rage. We tried to console her. Tried to comfort her, and she punched and clawed and screamed.

At that point, Jason and I just agreed that there was nothing we could do, but keep her safe. We left her in her room, and went back to ours to regroup. We watched her on our video monitor settle down on her bed. She sat there for almost 5 minutes staring off into the distance. Jason decided to go and lay with her, where he promptly returned and said: something is wrong!

He described that Maddi was unresponsive. Not talking. Not blinking. Not moving. He brought her into our room and laid her on our bed, where she just stared blankly. She didn’t respond to stimulus. She didn’t respond to pain. We knew immediately something was seriously wrong. We drove her to the Pediatric ER, where it was determined she was having a seizure. Once we got there, her eyes were deviated to the right, and her right leg was twitching. They administered Ativan to calm her brain, and then she went into respiratory distress. She was intubated and brought to the Pediatric ICU.

 

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