Our family spent several months on the PANDAS roller coaster - the ups and downs corresponding with Dora being on and off antibiotics. She would appear to be getting better and out of nowhere would fully regress and at times end up worse then when we first started her treatment. I met with her pediatrician to discuss this seemingly never ending cycle late May of this year. She had seen this pattern with patients before and said in every situation so far she was able to identify a strep carrier in the household. This meant that my husband, step son, and myself all were to be tested first by rapid strep and if that was negative - by blood. Since I was the only one there for the appointment she performed my swab that day and as soon as she looked down into my throat and saw my tonsils were missing she stopped to ask me a few questions.
I explained to her my personal history with strep (also listed here in my previous post), but was quick to assure her I had not contracted strep since my tonsils were removed six years ago. The doctor corrected me by saying, 'No, you mean you haven't had a sore throat since your tonsillectomy, but I can assure you that you had and probably still have strep.' She went on to explain that the constant exposure Dora has had to strep from her time in the womb on, would make her a very difficult case to treat. Her body does not know - and has never known - that the step bacteria should not be there. I had continued to feed her this toxic poison through my nurturing milk and endless kisses.
Along with the blood test for strep antibodies she also ordered an ANA test, measuring autoimmune activity, and a genetic test for MTHFR mutations (this mutation is related to multiple conditions that affect both the immune and nervous systems). My daughter and I tested positive for both - linking the source of her PANDAS roller coaster to her strongest advocate...me.
I wrestled with the natural guilt and denial that surfaced but once I let reality creep in I could clearly see that my own body was fighting strep and facing its own autoimmune challenges. For the longest time I thought I was permanently tired from working and being a mom, not realizing there could be something else going on and that it did not *have* to be so exhausting. We started the same treatments and I am working to keep myself healthy so she can be. It has actually brought us closer and she is more likely to try something new if I am doing it with her...like our newest adventure - going gluten and dairy free!
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