10/19/2026
Gracie May’s Story! ❤️
Watching our little girl come back to herself is a feeling we don't even know how to describe.
This is a story we've been trying to make sense of, and honestly, it's been one of the most bizarre, heartbreaking, and exhausting journeys we've ever experienced as parents.
A couple of years ago, Grace was diagnosed with autism. For a long time, we believed the severe episodes she experienced were part of her autism. They would come and go, and we did our best to understand them, help her, and get through them together as a family.
Then, after nearly a year without these severe episodes, everything suddenly changed.
Grace started school, and she absolutely LOVED it. During that first week, she got strep throat over the four-day weekend. She returned to school the second week, and that's when everything started to change.
The episodes came back, and they were more terrifying than ever before.
We can't even put into words what these episodes looked like. It was almost as if some invisible force was attacking our little girl. The rage that would fill her little body was unlike anything we had ever seen. She would throw things, try to punch things, thrash around, and cry uncontrollably. It was as if something had taken over, and we couldn't reach her. She seemed completely out of control, as though something was happening to her that none of us could see or understand.
One of the hardest parts was that touching her, talking to her, or trying to comfort her would make the episodes worse. Every instinct we had as her parents was telling us to help our little girl, but nothing we tried seemed to work.
I have a video of Grace during one of these episodes where she was asking for help. Imagine being a parent, watching your child ask you for help, desperately trying everything you can think of to help her, and realizing that nothing you do is making it better. She was asking for help, and I wanted so badly to give her the help she needed, but I didn't understand what was happening to her.
That feeling is something I will never forget.
As her mom and dad, we were watching our daughter go through something we couldn't explain. We didn't know what was happening inside her little body, and we had no idea how to reach her during those moments. It felt like something completely hidden was happening, and without knowing what it was, we didn't know how to help her.
During these episodes, she would lose her ability to speak. When the meltdowns finally ended, her speech would sometimes be slurred for a little while afterward. She would experience pain in her stomach, wrists, and ankles, too. Sometimes the episodes happened in the middle of the night. Other times, they seemed to start with an overwhelming feeling of hunger, even when she had recently eaten.
Along with the meltdowns, we were seeing anxiety and separation anxiety that made everyday life even harder for her. Things that might seem small to someone else could feel overwhelming to Grace, and watching her struggle through it all was heartbreaking.
The episodes were happening daily, sometimes multiple times a day, and could last anywhere from 30 minutes to an hour or even longer.
Eventually, Grace had to be pulled out of school. This was a little girl who LOVED school, and watching her go from being so excited to attend to struggling so much that she couldn't continue was heartbreaking.
For so long, we thought these episodes were just part of her autism. We had no idea there could be something else going on. We were doing everything we could with the information we had at the time, but we didn't know what we didn't know.
Then someone came into our lives who changed the way we looked at everything. An absolute angel told us about PANS/PANDAS, and we started comparing what our children were experiencing during their episodes. The similarities made us stop and really think about what we had been seeing in Grace.
We started looking back at her history, trying to connect the dots. That's when we were able to trace things back to Grace having strep throat twice. once in June and again during that first week of school in September.
One thing we are learning through all of this is that a child can have strep without showing the typical signs or symptoms, and some children can be strep carriers. Strep isn't always obvious, and you may not even realize it's there.
This is where PANDAS comes into the picture. In some children, the immune system's response to a strep infection may mistakenly target parts of the brain specifically the basal ganglia instead of just fighting the infection. This area of the brain helps regulate things like emotions, behavior, movement, and other functions. When this happens, it may contribute to the sudden, dramatic changes in a child's behavior and functioning that families can experience with PANDAS.
PANS can involve similar sudden changes, but it can have different possible triggers.
Suddenly, we had questions we had never even known to ask.
PANS/PANDAS became something we began investigating with her doctor. Grace's anti-DNase B antibody level came back at 680, an elevated result that can indicate a previous strep infection or immune response to strep. Her bloodwork also showed other elevated inflammatory markers, low vitamin D, and her ferritin is borderline low.
It's only been about a week since Grace started antibiotics, but the changes we are seeing have been incredible to witness.
She is carrying on conversations. She is following directions. She is happy. She is eating better. The sparkle in her eyes is coming back, and the hyperfixations that had become such a big part of her daily life are starting to fade. The OCD behaviors we were seeing are dwindling down, and we're also starting to see changes in the anxiety and separation anxiety that had become such a big part of her life.
And the meltdowns? They are becoming almost nonexistent.
When they do happen, they last around 10–15 minutes instead of the 30 minutes to an hour or even longer that we had been experiencing. They aren't escalating to the extreme episodes we were used to seeing, and she is able to communicate with us throughout them. We can talk to her, work through what's bothering her, and help her through it instead of watching her completely lose control.
The fact that she can communicate with us through these moments is something we don't take for granted. There was a time when these episodes took away her ability to speak, and we would be left waiting for her to come back to herself afterward. But even when the episodes ended, we often couldn't get any answers about what had happened because she would black out and have no recollection of what she had just gone through. We were left trying to piece everything together ourselves, not knowing what she had experienced or what was happening inside her little body. Now, being able to talk to her, understand what she's feeling, and actually work through these moments together is something we will never take for granted.
The conversations. The ability to follow directions. The happiness. The eating. The changes in her anxiety. The fading OCD behaviors. The sparkle in her eyes.
These might sound like little things to someone looking from the outside in, but when you've watched your child struggle like this, these changes are EVERYTHING.
This whole experience has been such a bizarre thing to wrap our minds around. It's been an emotional rollercoaster in every sense of the word, and an exhausting one at that.
Trying to make sense of everything Grace has been going through, looking back at things we never thought twice about, connecting dots we didn't even know existed, and realizing there may have been more going on than we ever imagined has been a lot to process.
There have been so many emotions, fear, confusion, heartbreak, frustration, guilt, and now, hope. We keep thinking about those moments when she was asking for help and we couldn't figure out how to help her. We wish we had known then what we are learning now, but we can only move forward with what we know today.
As her mom and dad, we would do absolutely anything to take away what she's been experiencing. Watching your child struggle and not knowing why is one of the hardest things in the world.
And we keep coming back to one thought, if we hadn't spoken to that angel who told us about PANS/PANDAS, would we have ever made these connections?
Would we still be thinking these episodes were simply part of her autism? Would we still be searching for answers without even knowing what questions to ask?
This is not talked about enough. Until this became part of our own story, we had no idea just how much we didn't know.
We are sharing Grace's story in hopes of helping somebody else who may be going through something similar.
If there is even one other family out there watching their child struggle, feeling helpless, confused, and searching for answers, we hope that sharing our experience might help them feel a little less alone.
We know what it feels like to watch your child struggle and not understand what is happening. We know what it feels like to try everything you can think of to help your little girl, only to feel like nothing is working. And we know what it feels like to believe you understand what your child is going through, only to discover there may be so much more to the story.
If sharing Grace's story helps even one family start asking questions, find someone who understands, or feel less alone in what they are going through, then sharing this very personal part of our lives will be worth it. I know we wouldn't be where we are if this mother didn't come forward and share hers.
We aren't sharing this because we have everything figured out. We don't. We are still working with her doctor, waiting on further answers, and trying to understand what this means for Grace. The questions keep piling up. We know there is still so much to learn.
But we are starting to see our little girl come back to us.
Her sparkle is returning. Her voice is there. Her happiness is shining through.
And as her mom and dad, we are holding onto every little bit of progress and hope that comes our way. ❤️
