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Talking in Public

We recently had another support group meeting. Our group continues to grow. It’s nice to support other parents, but difficult to hear the struggles and continued lack of help from the medical community here.

Another mother, whose son is recovering from 9 years of PANDAS, made arrangements for the two of us to speak at a local preschool. It was fantastic. I am addicted. I kept thinking, “this is the age we should be targeting, these teachers will see it first”. We were able to provide education and references for the teachers. I often forget how shocking the story is. We are scheduling another talk at another school sometime soon.

A bill was brought to the government in Massachusetts requiring health insurance companies to pay for PANDAS treatment. I’m usually not a fan of big government, but in this case, obviously, I agree. The cost of not treating the disorder is so much higher if it is not identified and treated early. I made phone calls to local senators trying to urge support…clearly I should have paid more attention in political science. I have not heard the outcome but did see a nice list of those supporting the bill.

Joshua contniues to do well. His handwriting has taken a nosedive but we remain off antibiotics (6 1/2 months now) and are closely following his allergy diet and giving immune supportive supplements. I’m usually not a huge fan of all of this, but seeing how everyone in the house has had a couple of winter illnesses and Joshua has been the healthiest one in the home…..well, maybe I need to be taking the same stuff he is!! I have heard that PANDAS children do the best from March through September….not long left until March. I am continuing to watch the CDC flu map and praying that we avoid the flu as it is yet another trigger for PANDAS.

Joshua has 3 weeks left of basketball. He is getting the hang of it. I keep reminding myself that this is all so new to him. We are still recovering and will continue to do so!

2 Responses to “Talking in Public”

  1. Theresa J says:

    I find that March thru September timing off for us. Usually we get strep in the spring -Feb., March or April and summer is hell-ish.
    Our steroid burst was a wonderful normal couple of weeks, but
    back to pandas/ pans normal now.
    I hope that this disease can become non-controversial so the doctors will get on with the treatments to help these kids.

    • Mary Knoska says:

      My daughter just finished her steroid burst. I did not see any improvement until after the two week observation. We are 3 days past that period and I see marked improvement. How long do people usually see the improvement last for?

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