my child isn’t crazy

during the two years of various diagnosis I had come to a cross roads.

Do not ever let a doctor tell you, that your mothers intuition isn’t real. We were blessed with this intuition for a reason.

We had endured evaluation after evaluation. I had a list of various opinions and diagnosis’ a mile long it seemed. She did not fully fit autism, nor sensory processing. I knew she did not have bi-polar disorder. I wasn’t in denial, but I knew my child was not crazy and I refused to accept a diagnosis I knew in the bottom of my being was incorrect. I even had a psychiatrist tell me I was wrong and to stop researching, and that ended in be walking out of an appointment.

I thank god every day for our pediatrician. He even disagreed she wasn’t any of these things. It was something else and we were not going to stop until we found out.

I remember walking into his office almost weekly with a stack of possible diagnosis from allergies, to celiac, to possible vitamin deficiencies, and he tested for them all. And every test came back normal. She was going between being fine, to not it seemed every 3 months. It was like a cycle and neither of us could put a finger on it. He had scheduled us to go down to cleveland clinic after he had a conference with one of their neurologists. He and I both agreed, it was something neurological. Something in her brain just was not working and we needed to find out what.

I remember posting about this on my facebook. I had become open about it, I was tired of being prisoner, tired of the assumptions of what was going on, and tired of putting on this fake family persona. It was exhausting and I was alone.

I remember a friend commenting about PANDAS.

yes, my first thought was “what does a bear have to do with this?” but, I looked it up, I was grasping at straws at this point.

Pediatric Autoimmune Neuropsychiatric Disorder accompanied by Strep

What? She had never had strep though, but she matched every single symptom listed. The more I read, the more I said “this is my child” I even remember telling my husband to look at this. At this point he thought I was loosing my mind and in denial about her mental health, but he had learned to just go along with it because he wanted her better just as much as I did.

I emailed her pediatrician the next day about his thought on PANDAS, and his response was “ABSOLUTLY, I absolutely believe in this diagnosis, why hadn’t we thought about this before”

*not that he is not a smart man, he is BRILLIANT, I think because she had never had strep it was an out of sight out of mind. We had just started realizing her cycles of behavior were related to sickness*

WOW! Something that fit! and let me tell you, my mothers instinct was this was it. This is the piece to the puzzle I have been searching for

BUT…..

Ah, as with any crazy disorder, there were many doubters in the community.

See, PANS/PANDAS is not classified as a mental health disorder. It mimics a severe psychiatric disorder, but it is actually an autoimmune disorder exasperated any time the immune system is activated.

I got on facebook and I joined all the groups. Our pediatrician fully believed in this but he had no idea how to diagnose or treat.

When I joined the groups, the overwhelming amount of support. Knowing I wasn’t crazy. I was no longer alone. I found a safe space to cry and be honest about our life. How hard it was. How much I hated this life.

But most importantly, I found our saving grace. A leading PANS doctor right here where we lived.

FINALLY someone to help my little girl!