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In the Lymelight

The world of PANDAS/PANS is heating up. Illinois has legislation and an advisory council for PANDAS/PANS, there have been numerous conferences (including the one in Georgetown followed by the gala for the premiere of the documentary, “My Kid is Not Crazy” by Tim Sorel, and October 9th is once again PANDAS Awareness Day across the country. Research is continuing…some children are getting help….some are not.  When we released the book Joshua’s Missing Peace in February of 2012 there was so much we didn’t know. There was so much no one knew. I heard Lyme disease being thrown about every now and then but  honestly didn’t think much of it. Joshua was our first child….every hair that grew in we recognized. I had heard of Lyme but knew (thought) that it could only be transmitted by ticks. I have never found a tick on Joshua. By the third child, their arm could fall off and it would take a week to notice….but not with your first. I never had him tested because there was no possibility….or so I thought.

Overall, Joshua is doing tremendous…exceeding every hope I could have had back in the dark days when he was so infected with strep and when we were unaware. There were still a few things that weren’t quite right. His incredible sensitivity to noise. (it’s like living with Superman), his specific OCD with his siblings, his constant headaches. We had his tonsils removed in December of 2013 and in preparation for that, his surgeon put him on 2 very strong antibiotics. Within 10 days all of the remaining symptoms were gone. When he came off the medicine…the symptoms slowly crept back in. If you have read the book, you know how this goes. I knew we needed an incredible doctor. One that had the time, patience and know how to figure out what this was. I had a recommendation but had to wait a few weeks to get an appointment. Of course, I started my nightly research sessions on the internet. What does clindamycin and rifampin treat?  Borrelia Burgdorferi- Lyme Disease

We can not stay silent anymore. Joshua and I will be working together to bring you pieces of life with Lyme. Welcome to part 2…”In the Lymelight”

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