April 11th, 2018
My life is really unpredictable right now.
Recently my 10 year old daughter was diagnosed with PANDAS. No she hasn’t become a big black and white bear. It’s a long acronym basically describing kids that have strep and exhibit neurological symptoms causing brain inflammation. It’s crazy because we actually knew it was strep, a clear, positive test. Some cases of PANDAS go misdiagnosed as psychiatric issues because they miss the strep. Thankfully I surround myself with amazing doctors and practitioners so we were on it from the beginning. The part that made me concerned was she was hallucinating, yes my 10 year old was seeing scary things. December 18th we started the antibiotics, routine for strep. She was on them for 10 days which gave her a great Christmas. Day 11 she was symptomatic again, so they put her on something stronger for another 10 days, This pattern of a variety of antibiotics has gone on for 4 months. The hallucinations are gone, but she has these “episodes” sometimes that last for several hours. She turns sheet white with has dark circles under her eyes and complains of excruciating stomach pain or feels too sick to eat. I have now learned this is not uncommon with PANDAS kids. It is more than her stomach hurting, she doesn't want to do anything. At first I couldn’t put my finger on it, but now I can, she is “depressed.” A word I would never have used for her, ever.
Our lives are now unpredictable, she was a happy, social spitfire that was ready to conquer the world now there are days where I can barely get her to school, and I have to bribe her to have her best friend over. She is so fearful of going out to dinner she has panic attacks. She has always wanted to go to Paris and now she won’t even get in the car to go to Boston. I now wonder how many other children suffer from PANDAS with all the unexplained anxiety, depression, OCD in children. I can see how one may not connect the dots because I questioned myself and I knew. We are in limbo waiting to get into a PANDAS clinic, waiting sucks.
Our lives have been turned upside down all from one case of strep. I know we will figure it out because I won’t rest until we do. But it’s absolutely heart wrenching when your child turns to you afraid and asks you “Mommy am I ever going to feel better?” I hide in my room crying for fear of her seeing me.
There are times you wouldn't believe she's sick as she runs through the house fighting and laughing with her siblings. We are on an emotional rollercoaster waiting for some consistency and normalcy. I am learning not to plan anything and to wake up in the morning not knowing what each will bring.