Early symptoms, endless questions, and the stress of waiting for answers.
McKenzie was a bright, adventurous 6-year-old when sudden changes began—vomiting, refusing school, aggression, and emotional outbursts. Her parents knew something was wrong, but were told to “wait it out.” Labs took days. Doctors leaned toward psychiatry, overlooking infection.
The stress of those early stages—knowing something is very wrong, but waiting to see if anyone will help—is a reality many PANS/PANDAS families know too well.
McKenzie eventually tested positive for strep, and antibiotics brought rapid relief. But her story is a reminder: PANS/PANDAS is a clinical diagnosis. It cannot rely on a single set of labs. Clinicians must look at the whole picture of sudden-onset symptoms.
For families navigating these early, confusing days, ASPIRE offers resources:
🧪 Understanding Diagnosis: https://aspire.care/symptoms-diagnosis/diagnosing/
📘 GAS/Strep Toolkit: https://aspire.care/families-parents-caregivers/toolkit-testing-antibiotic-usage-for-gas-in-pans-pandas/
McKenzie hasn’t officially been diagnosed with PANDAS by her pediatrician, as we are in the early stages; however, no one can convince me otherwise. My family’s life has been completely turned upside down for the last several months, with so many overwhelming emotions felt by all. I want to help as many families as possible and raise awareness about this issue. To begin, I will share our story so far.
Before March, my McKenzie was an outgoing, school-loving, adventurous, sweet, and sassy 6-year-old! She is a twin and is the oldest by 9 minutes. The leader of the pack. Intelligent and sassy at times, but overall a good child.
McKenzie has been sick on and off since the beginning of the year.
- 12/31 – We took the twins to the doctor for a fever, sore throat, and cough. Antibiotics and breathing treatments were prescribed for a respiratory infection.
- 1/29- Took McKenzie to the doctor for fever and congestion. Antibiotics were prescribed for sinusitis.
- 2/11- Took McKenzie to the doctor for a fever and a sore throat. She was tested for the Flu, as her dad and brother were also sick with it. I asked the pediatrician at that visit if there was anything we could give McKenzie to support her immune system, as she had been so sick this year. He advised that there wasn’t much that could be given due to her age. He stated that the supplements available for immune health require administering many of them to be effective, and he didn’t feel it was healthy at this age.
Fast forward to the second week of March, and I received a text from the teacher stating that McKenzie was complaining of not feeling well and had thrown up. I picked her up from school early, and she slept for the remainder of the day, experiencing no further vomiting episodes. She returned to school and attended the remainder of the week. We received a call in the middle of the next week saying McKenzie was sick and had vomited again. Her dad picked her up, and she continued to vomit 2 more times. We kept her at home the next day, where she rested and ate and drank very little. We sent McKenzie back to school for the remainder of the week, but had to pick her up early both days.
Over the weekend, she wasn’t acting like her normal hyperactive, outgoing self. She just lay around complaining of not feeling well. I asked her what didn’t feel good, and she said she felt funny when she sat or stood. I suspected she was dehydrated and pushed fluids. On Monday, she was still complaining of not feeling well, so I took her to her pediatrician. They did orthostatic vitals and checked her urine, finding nothing wrong. Said she was probably still behind on fluids and should resolve within a few days. At this point, I started worrying that it was more than dehydration, as she had not thrown up in excess, but decided to see how she did over the next few days.
The next morning, when I woke her to get ready for school, she flat-out refused to get ready. She screamed and hollered. I had to wrestle with her to get her dressed, brush her teeth and hair, and carry her to the car. Knowing this was out of character for her, I thought perhaps she had grown accustomed to being home. While there, she cried and distanced herself from others for most of the day. The next morning was even worse, so much so that her dad suggested we take her to the ER. While there, we explained all that we had been experiencing with McKenzie and how unlike this behavior was for her. At first glance, she looks like a child who doesn’t belong there, and you feel silly. Especially when all labs come back normal and you’re sent home without any answers or explanation of what is wrong with your baby. At this point, I was still very much concerned that there was something seriously wrong with my child, but nothing was diagnosed medically.
I tried to get her ready for school the next morning, but was unable. She was crying, and I was crying. Her dad had to come home and help get her ready, and then had to carry her outside of the house, kicking and screaming, and force her into the car. Once at school, she refused to get out. He had to pull and pry her from the car and carry her into the school. She refused to do her work most of the day. The next morning, we didn’t have any issues. We took the twins late as we were attending a field trip with them. Over the weekend, we started to see an outburst of anger and behavior changes in McKenzie. They would last for a short amount of time, but would be very intense. I called the doctor the following week and informed them of the challenges we were facing and that these behaviors were intensifying with each day. They said to give her some time, and she would come around. Our morning routines changed so that their dad had to come back home each morning to help get her ready and take her to school, as she would not willingly do anything. No one from the school reached out to us. We had to initiate contact with both the counselor and the principal. We needed help! We knew that her behavior was extreme and not acceptable, but we didn’t know what to do.
Her dad and I both work at our local hospital, and we had been discussing with our coworkers what we had been going through, as it was all-consuming. In the middle of that week, one of my coworkers/friends texted asking if I thought McKenzie could have PANDAS. I’m not going to lie, I had to Google what it was. I’d never heard of it before. I did a quick Google search and saw it was related to strep, and immediately replied that she hasn’t had strep this year. About an hour later, PANDAS was still on my mind. So I researched online, and was amazed by how similar McKenzie’s symptoms were to those of children with PANDAS. One diagnosing symptom that put doubt in my mind was the presence of OCD or Tics, which McKenzie did not have either. She did have the sudden onset of aggression, ODD, anxiety, and regression at school. That night, McKenzie had an outburst of anger where she screamed for a solid 40 minutes before calming down.
I called the doctor’s office the next morning, saying we needed help. The nurse said McKenzie would need a consultation appointment, which requires more time, and they only book 2 appointments a week. I asked her if this could possibly be PANDAS, even though she hasn’t had strep to our knowledge. She said the antibiotics that she had been prescribed so far should have taken care of it, but would pass this message along to the doctor and scheduled McKenzie for an appointment a week later. I felt so defeated, and didn’t know how we were to proceed with our normal lives, given the way McKenzie was acting. I called the doctors again later in the day, completely distraught, begging for an earlier appointment if they had a cancellation. The nurse called back with an appointment for the next day.
At the appointment, the doctor decided to speak with her dad and me separately at first to get a clear picture of what we have been dealing with. She asked many questions about possible scenarios that could be causing great anxiety for McKenzie, but nothing made sense. She then went and talked to McKenzie before we were all rejoined to speak together. The doctor said she would run some labs and test for lead exposure, and suggested that we put McKenzie on a low-dose anxiety medication along with therapy. Her dad asked if this could possibly be PANDAS? She said that it’s extremely rare, but with her all sick visits and age it couldn’t be ruled it out without testing. She ordered the labs, and we agreed to get counseling scheduled with the in-house counselor. The earliest appointment available with the counselor was May 15th.
We left the office with some hope and went straight to the hospital to get her labs drawn. Some of the labs that day came back normal, except that her BUN/CREATININE ratio was elevated. Most of the labs could take up to 8 days to result out. The next week (last week) was spring break, and her dad and I had taken the week off to spend time with them. We needed it. We were mentally and physically exhausted and needed some rest. We took small trips throughout the week tiptoeing as not to trigger an aggressive outburst from McKenzie. She had several episodes that week, seemingly intensifying with each occurrence. At times, I didn’t recognize my child. Her eyes looked weak, and she often looked vacant.
My thoughts ranged that week from wondering if this is what our new normal looked like, to whether my baby has a tumor, to whether she has PANDAS? We called the hospital every day inquiring about her results. It wasn’t until Sunday that we got the results that her anti-DNaseb levels were elevated.
Monday after Spring Break wasn’t any different. McKenzie continued to put up a fight. Her dad and I met with the principal to discuss our options for the remainder of the school year. She proposed Homebound to reduce the amount of stress for everyone, as well as half days. We wanted to wait to speak with the doctor to see what she suggested. I sent all the lab results to the doctor’s office and waited for a phone call. I had not heard from them by midday, so I called. I spoke with the nurse, stating no changes in McKenzie, and asked if they received the labs. She said they must be in the fax box and that she would send them to the doctor and call me back. I never received a phone call. The next morning, I tried to get McKenzie ready without her fathers’s help, and she proceeded to bite, kick, and spit on me. I was so upset. She had NEVER intentionally caused harm to me. I called back the next morning and spoke to the nurse to ensure the labs were received. She said that the doctor is referring her to psychiatry and possibly putting her on a low-dose mood stabilizer. I said okay, that’s great, but what about her labs?? She said she would have to call me back. The next call was from the doctor apologizing that she did not see the positive strep until now, and that it changed her course of treatment.
We started her on antibiotics and Ibuprofen on Tuesday. The next morning was still a struggle, but it wasn’t as intense. After being on antibiotics and ibuprofen for 48 hours, McKenzie woke up on Thursday morning, got fully dressed, and walked into school by herself. She did the same yesterday, and hasn’t had an outburst since! The amount of relief that her father and I feel right now is immeasurable. I don’t know what our future looks like. I don’t know if we’re in the clear, but to know her body is responding to the medication and that my baby is still in there is reassuring!
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Gabriella True
