Long Overdue Update

It has been a long time since our last post but it seems things are heating up in the PANDAS world…especially in St. Louis. Joshua is doing well. We finally have a local biomedical doctor who is able to keep him healthy and update his testing. We no longer have to make frequent trips to Kansas City. Our support group
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The Apple Tree

This past weekend I had an experience that has been on my mind all day. 2 years ago we planted 2 apple trees. I was so excited. I researched types of apples. I planted two because I learned about apple tree pollination. I even went out when the weather got cold and wrapped them in garbage bags so they wouldn’t
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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
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PANDAS Support Strengthening

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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Organic Acid Testing

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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New School Year

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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Radio show can be heard online!!

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!!!

Radio show

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!

The Report Is in….

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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