On March 27, 2012 our life was turned upside down when our sweet little girl was taken from us. No, not in the literal sense, but we had no idea who this little girl was that was looking back at us. 

We had been struggling with various behavior problems for weeks. I seriously was at my whit’s end. It’s a terrible feeling when you love your child, but you really don’t like them. It’s a dark thought in a mother’s mind. But this is a real story, with real feelings. The details are important to this story. 

Along with the behavior problems, Avery had been complaining non-stop about urinary issues. I had taken her to the pediatrician to have her checked for a UTI. They found nothing. At this appointment, I recalled mentioning the behavioral problems we were also dealing with at the time. The pediatrician’s office thought perhaps it was due to a new baby in the house. I wasn’t buying it. That “new” baby was over 6 months old. And Avery adored her. Avery was also dealing with a nasty cough that just would not go away, so they suggested we start an allergy medicine and see if that “dries things up”. We had a generic Zyrtec at home already, so we started her on that right away. 

Fast forward to Friday, March 16, the start of Spring break. Avery gets out of bed around 10:00pm complaining of stomach upset and vomits all over the stairs. Great start to spring break. She is sick with what appears to be a 24- hour bug. The following several nights are very difficult. She won’t go to sleep on her own. She wants me to stay with her. We try everything. We give her melatonin to help her sleep. I hold her hand until she falls asleep. Anything and everything, I try it. Sometimes it works sometimes it doesn’t. She says she’s afraid, but can’t articulate what exactly she’s afraid of. She’s not right. Something is wrong. It’s just weird. It’s hard to explain. 

A couple weeks after the first UTI test, she was still having urinary problems, so I took her to the local children’s urgent care and also talked to them about the behavioral issues. The urine test found nothing. The urgent care had nothing for me at all on the behavioral topic. This was the second medical professional group we had seen and both sent us on our way. 

The difficulty sleeping continued. One night we just let her cry herself to sleep because we couldn’t console her. The next night, again we let her cry. But this night she didn’t just cry, she screamed. She pleaded for us to come back to her room. She was full of complete and utter terror. This is the start of the WORST NIGHT OF MY LIFE. It’s March 27, 2012. 

It’s a bit of a blur now. I thank God that I have a hard time remembering all the details. The short story, she never went to sleep that night. She was confused, scared, extremely agitated, and angry. She couldn’t settle down, but was so very tired. She would hide in the corner. It was awful. I made several calls to the on-call doctor. They had nothing for me. I almost took her to the emergency room once around midnight. But I second-guessed myself. Then at 4:00 am, I finally took her to Children’s Emergency Room. Oh, this was also a time when Erick was sick with Labrynthitis and couldn’t drive. So, I ended up calling my friend to come sleep on my sofa so I could drive Avery and Erick to the ER. I had to drop them off because I was still exclusively nursing the baby and had to drive home to be with her. Erick and Avery spent several hours at the ER. They again found nothing. Even though the doctors said they have “ruled out anything medical” they did no tests on her. I picked them up around 9:00 am. The social worker had spoken to Avery and recapped her findings with me when I get there. The social worker said Avery is a highly anxious little girl and needs therapy. The ER staff basically sent us on our way, with a good luck and sympathetic look. Meanwhile, Avery still hadn’t slept. I couldn’t keep myself together. I thought, “This is not happening.” We left the hospital in a daze and followed up later that morning with our pediatrician’s office. 

The pediatrician still had nothing for us. She asked us tons of questions about family history of mental disorders. Erick and I looked like a freight train hit us and backed up and hit us again for good measure. I was a complete mess when they were about to send us home with nothing, yet again. Not even anything to help my baby sleep. Erick stepped up and told them we’re not leaving without help. They finally gave us something to help her sleep. Oh, we did also leave with one great thing from that appointment. Avery told the pediatrician that she was afraid of her room so the doctor suggested Avery sleep in the office on the chaise. No big deal right? Except she ended up sleeping on that chaise for three months! Oh, I digress. 

We battled Avery’s anxiety and behavior issues for a few more days. Now I don’t mean to make this seem light. When I say battle, I mean her emotions are so out of whack that one day, when she got upset because she couldn’t have ice cream because her behavior was not acceptable, she ended up curled up on the floor in her room with a fear stricken blank stare on her face, just rocking back and forth and uttering nonsense. I have never cried so much in all of my life. All I could do was hold her until I couldn’t handle it anymore and had to walk away. She still required sleep meds to get to sleep, but it would still take her several hours to fall asleep. Then, she wouldn’t stay asleep, and would wake for hours in the middle of the night. Every night. Erick and I, and a couple times my mom, would take turns sleeping on the floor in the office in hopes of reducing the outbursts. This is about when Erick and I found the fight in us again. We decided that on the evening of April 1, after we get her to sleep, we were going to stay up and do research for as long as it takes to find some answers. 

So, I went about my “normal” routine of trying to get Avery to sleep. And by the time I tiptoed out of the office about an hour later, Erick had found something of interest. Up until this point we were thinking this was all an adverse reaction to the Zyrtec we started her on weeks before. Made sense. It was the ONLY thing that had changed in her routine. So, Erick started researching behavior issues associated with Zyrtec. And let me tell you, there are issues with Zyrtec. But, on a message board pertaining to Zyrtec he found a woman that made reference to something called P.A.N.D.A.S. Quick! Google search! Pediatric Autoimmune Neurological Disorder Associated with Strep. 

It was a dead ringer for everything, and I mean everything, Avery was suffering from: 

• Abrupt onset of OCD (the urinary issues) 
• Anxiety 
• Emotional Lability 
• Aggression 
• Irritability 
• Oppositional Behavior 
• Increased urinary frequency 

She had all of these. I called the afterhours voicemail to schedule an appointment to get her tested for Strep the next day. Long story short – she was positive for strep without any classic symptoms of strep. She had PANDAS. Another battle was about to begin because our pediatrician didn’t believe PANDAS existed. 

Over the next few days we dealt with our non-believing pediatrician and finally decided to have a phone consult with a PANDAS doctor in Chicago. He was worth his fee in gold. He confirmed the diagnosis of PANDAS and explained to us what was going on in Avery’s brain. The strep was causing an autoimmune reaction that was attacking the part of her brain that controls behavior. She was really sick. 

We finally ended up changing pediatricians. Our new pediatrician is PANDAS friendly, meaning she actually believes it exists and treats its appropriately. She ordered more tests on Avery and we found out a couple weeks later that not only did she have strep, but she had mycoplasma as well (walking pneumonia). Both cause PANDAS symptoms. She completed three rounds of hardcore antibiotics and eventually, slowly, we got our little girl back. 

I share Avery’s story after six months because it is my hope that someone will read this and be able to help another child. This is a life changing disorder, but it is a treatable disorder. Antibiotics are what these kids need. It’s so simple. But no one found it for us. Not the pediatrician. Not the urgent care. Not the Emergency room. 

It is by God’s grace that we were able to figure this out on our own, with no help from the medical community. I am forever grateful for my friend that works the night shift, is an RN, and was determined to figure out what was going on too. I would text her all night long looking for answers. I’m thankful for God putting people in our path that could help us with their own experiences and the friends that helped with the baby when we needed to go to so many doctors’ appointments. I’m thankful for friends that lent an ear when I just couldn’t keep it together. For my mom helping us through some of those difficult nights. For my brother’s simple but impactful Facebook message. The prayers. I could go on and on. 

I’m eternally giving thanks to God for showing us his presence in the darkness and helping us pull though one of the most difficult times in our lives. 

It’s still a struggle and every infection Avery is exposed to can cause a flare up. But we now know the symptoms and are getting better every day at recognizing their onset. Our pediatrician has empowered us with the ability to refill her antibiotics as needed. Avery is one strong girl. She understands her limitations and is so very good about it. We steer clear of food-dyes, refined sugars, cow’s milk and gluten. She takes several supplements designed to boost her immune system and hopefully keep her from getting sick again.