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
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We had another PANDAS support group meeting here Sunday afternoon. It is clear that the word is spreading and research is trickling in. One woman in the area went to a PANDAS convention in Irvine, California and brought back notes from all the leading researchers. It was exciting for all of us there to know that the research is coming.
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What a week! Yesterday, Joshua and I made a poster to send to the protest in Boston. It was in honor of a 16 year old PANDAS//PANS pt. who was taken from her family due to PANDAS symptoms. There is a gag order in place. She was removed from her antibiotics and gluten free diet (which helps PANDAS children). She
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This was released on FaceBook by Beth Maloney, PANDAS advocate and author. This is why education about this disorder is so important. This could be any family with a PANDAS child and it is why many of us are so fearful about talking to our doctor’s about the horrors going onin our homes before we have help. Joshua’s Missing Peace
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A new school year has begun! This raises a lot of emotions for PANDAS parents. Excitement for the new routine and new year…..and anxiety for viruses and infections that can set off a flare of PANDAS. This is the first school year in two years where Joshua is not on antibiotics to prevent an infection. We have not taken an
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Tomorrow at 12:30 central time, I will be interviewed about our experience with PANDAS and our book Joshuas Missing Peace. This is a huge chance to raise awareness about this condition. You can listen online at www.KFAV.com and click on the listen live button on the left side! Spread the word!!!

This Sunday, September 2, there will be a radio interview about PANDAS on 99.9 FM in St. Louis. It will be from 12:30 to 1:00 on a show about people with disabilities, called Disability Discussions. My friend, Sarah, will be interviewing me about the book and the diagnosis. Stay tuned!

We went back to the doctor in Kansas City on Friday. I was dealing quite well with Joshua’s food allergies. We had adjusted his diet, he was reading labels…..then we got the bloodwork back. Basically, we had a lot more allergies to address. Most importantly, we were able to identify some thyroid issues directly linked to a high (very high)
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