The appointment came and went. I was at peace. The knew without a doubt she fit the PANS criteria, but there was a lot of testing needed to secure the diagnosis.
35 various blood tests were performed. This was the most thorough evaluation we had. The listened to me and validated my concerns in knowing that this was not a psychiatric illness. They agreed she was sick, her body was suffering. Her brain was suffering.
When I received the phone call to go over her results I felt I could cry. I was right. My child has PANS. Finally, I can put a name to all of this madness that has consumed my life. There is something wrong with my child. She isn’t crazy. My Child is not crazy.
The blood work showed us a lot.
It answered the question of when this started. and the timeline is an absolute fit for what the blood work answered.
Remember when I said she was 18 months and woke up a completely different baby.
Well, around that time she had contracted normal childhood viruses, a skin rash called Roseola, and at the same time hand foot and mouth.
Now.. what does that have to do with PANS
A faulty immune system.
Her immune system system decided it was going to respond with something known as “molecular mimicry” this is when your immune system mistakenly attacks healthy normal body tissues, instead of only the virus… and because of hour our immune system works, it creates antibodies that “remember” this… so it happens over, and over, and over again
Now, what does this have to do with ongoing psychiatric illness?
Well, that healthy tissue the body is attacking, is their brain.
Yes, you read that correctly. Her body is attacking the basal ganglia of her brain each and every time she has an immune response. The area of the brain responsible for movement and behavior.
What does this mean… Nothing in the grand scheme of things. There is no magic fix. You cant take a pill and make it go away. There is no therapy for it. Its going to be a lifelong battle to keep her immune system under control. A life of fear that every time she gets sick we will relive this hell over and over and over again.
How else has her body been impacted? Well since your brain is your powerhouse to all the systems in the body, a lot of other symptoms have been effected. Her thyroid is inflamed. Adrenal system is shot (let me tell you living with someone who is constantly in fight flight mode is exhausting), many vitamins and minerals are depleted causing more behavior issue on top of brain inflammation.
Her brain is literally on fire all of the time.
Oh how I wish a magic pill could fix this. We have a big box of pills to hopefully help us manage the symptoms to hopefully one day see our girl again. To break her free of the prison that is holding her. For her to not have to suffer any longer.
My child has PANS
And this is our life
A PANS warriors journey 