Our Story- Diagnosis

Buckle up. This is will be a long one but one I hope will be worth the read. I want to preface this with the fact that I am sharing all of this with Nolan’s permission. I asked him if he was okay with me sharing it and he said that he was happy to share it in hopes it would help someone else.

I have eluded in some social media posts to Nolan’s mental health struggles over the last few years not really ever letting on to its severity. Over the last two years, we have gotten the following diagnoses: major depression, anxiety, separation anxiety, OCD, and ADHD. There have some really been dark days. We have had some victories but deep down I felt like my child had slipped away from me. Even in the victories, it just seemed so far from where we should be. With the help of a wonderful psychiatrist, we made a tremendous amount of progress- especially from Spring of 2024 through October 2025 - but things still felt hard and I couldn’t shake the thought that we were missing something. For quite some time, I had suspected something in particular but just couldn’t figure out a timeline, so I kept brushing the thought aside.

In October, the week of Nolan’s 11th birthday, he got strep throat. By the middle of November, he had some major regressions in his progress. I racked my brain trying to figure out why. What had changed? A light bulb finally went off. The strep throat infection served as a major piece of timeline that would confirm for me my suspicions held some validity.

Steve and I talked and I told him I was more sure than I had ever been that Nolan had PANDAS and the strep in October had triggered a flair for him. This disease is not something widely known about and I had already looked into the closest doctor that will diagnose and treat it. Dr Ashley at Innovative Healthcare in Dothan, Alabama. Steve and I agreed that my intuition (or whatever you want to call it) could not be ignored. If he ended up not having it, then we ruled something else out.

Last Friday, Nolan, Steve and I traveled to Dothan for a visit with Dr Ashley. He created a time line with us of Nolan from birth to present day. We discussed every symptom and every detail we could think of and we made a connection in the timeline. The initial piece of the puzzle I had been missing because I was looking to go back and find a strep infection, but it wasn’t strep and I didn’t realize there was another option…In August of 2021, Nolan, along with Maddie and I, had COVID. Nolan was completely asymptomatic but we had tested the whole family because of exposure and he was positive. The kids didn’t get to start school that week. In December of 2021, Nolan had his first suicidal ideation. Dr Ashley said post Covid they are seeing so many more kids with PANDAS as a result of Covid.

Last Friday, we got a diagnosis of long Covid and PANDAS.  Dr Ashley is a wonderful physician and person. His story is interesting and something maybe I can share sometime here. He is a godsend and I cannot describe the validation, relief and hope that came over us last Friday. We started treatment in his office the same day. Treatment isn’t linear for PANDAS, however, after treating over 800 kids, he has a pretty good idea of the direction to head in. Due to the fact that Covid is the culprit and a number of other factors, it may take some trial & error and time. Dr Ashley told Nolan (and us) that is goal was to get Nolan back to 90-100% of his baseline pre covid mental health. We love Nolan no matter what, but long for the day when remission  brings back that silly, goofy kid we have been missing for far too long. The kid free of all the things holding him back for the last 4 years.

PANDAS is Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Essentially when a kid gets Strep Throat or Scarlett Fever (or Covid), the immune system attacks the basal ganglia in the brain which affects fight or flight and other neuropsychological (mental health) functions.

Nolan, Steve and I hope that by sharing Nolan’s story we can help others. We have already connected with another family in our church that may be looking at diagnosis. Please, if you ever hear of a child suffering with mental health disorders that just don’t completely add up sor were closely associated with a viral or bacterial infection, send them our way. We would love to connect them with Dr Ashley and support them in any way we can!