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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 is declining and her parents can’t even get her out to get her help elsewhere. It really hits home for all PANDAS kids…that could be any one of us. There is a Facebook page Free Elizabeth Wray..please Like the page and show your support. There is a protest going on at the hospital today through Sunday. We made our poster stating that recovery is possible with APPROPRIATE medical treatment (which does not include taking a frightened sick child from their family).

Today was our follow up with the neuroimmunologist in Kansas. As usual, in true Suthar fashion, everything did not go as expected. Joshua woke up throwing up so I had to call and change our appointment to November. Then, at 10:00 (our appointment was at 2), he said he was feeling much better and wanted to go. It is a 4 hour drive. After the fastest shower in history, throwing allergen free food in a bag in the car and herding children in…we were off. We were about 10 minutes late…but we made it.

Our Doctor ordered an Organic Acids Test (OATS). I had never heard of this, but ironically after it was ordered, I heard a knowledgable PANDAS doctor state that all PANDAS/PANS children needed this test. The results took 2 months but were quite interesting, especially since we also ordered one on our non PANDAS child, Noah. An organic acid test shows fungal, yeast and bacterial growth, Krebs cycle and Oxalate information, nutritional markers and amino acid information…and more. I won’t go into the specifics, but we still have some work to do and have added a few more supplements (not medications) to Joshua’s regime. Noah’s test was interesting and I wonder if Joshua’s test would have looked that way if we had tested him before the strep infection that triggered his PANDAS. The doctor says there is no way to know except that we must address the immune problems as both of their immune systems are OVER active…balance is so important.

For my friends interested in the count. Joshua has had 3 days of antibiotics since July 29th. Those days were only because he had 2 classmates who tested positive for strep and I wasn’t taking any chances! He continues to be off all prescription medications…no ADD meds, no antibiotics. His behavior reports are stellar and his chess coach asked us to enter Joshua in chess tournaments leading to the state tournament as he thinks it is possible Joshua is in the top 10 in the state. It’s so ironic that my co-author, Laura Sherman, has recently released her “Chess Is Child’s Play” book, a truly wonderful tool for teaching children (and adults) chess. The first tournament will be Saturday. We have had a few PANDAS “flares” (an hour or so where symptoms come back)in the last 3 months which is probably less than we saw on antibiotics. It is a good reminder of how far we have come.

We still have a few more follow up blood tests but are now taking it slower. We will add the recommended supplements and I will keep everyone posted!

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