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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. The Cunningham test will be available in January 2013. This test is a definitive yes/no for PANDAS. It will be available through Quest labs. This should be helpful for skeptical physicians who find it difficult to put the puzzle together from other blood tests and medical history alone. This test can be run on a suspect PANDAS child. The only exception is that if you have had IVIG, you may want to wait 3-6 months to ensure all donor antibodies are cleared.

The information also validated a lot of what we have been doing with Joshua personally. Diet changes involving allergenic foods, going gluten and dairy free has been helpful for Joshua. Research confirmed these foods cause inflammation which is a problem and can cause symptoms. Although we needed antibiotics, our specialist in Kansas City feels we need to work on getting his gut back to normal. Research supports the gut-brain-immune connection and we continue to see positive benefits as we stay on his diet. We are getting requests several times per week of parents wanting to join our Facebook group. These parents either have children that are diagnosed or are seeking information for a child that has a potential to have this disorder. We are well over 50 now and have now been in contact with the Illinois Support Group. Things are becoming more organized.

As far as Joshua is concerned….he remains off of antibiotics. Since July 29th, he has received 3 days worth of a low dose due to 3 children in his class being out with strep…it was preventative. Our family has had several viruses recently. Last year, these would create symptoms for him and we would watch him slowly crawl back to baseline after illness. We don’t see that this year. The effects, if any, are minimal. He remains off all attention medications as well. We recently had a conference with his teacher who sees absolutely no difficulties this year. He is making excellent grades and placed 5th in an area wide chess competition last Saturday. He remains on biomedical supplememts (anti yeast, anti fungals, probiotics and vitamins) and allergy shots but is on no prescriptions. He told me this year that he feels like a puzzle piece that finally got put with the right puzzle……perfect!

2 Responses to “PANDAS Support Strengthening”

  1. Michelle P. says:

    That’s wonderful news, Lori. Any chance you would be willing to share the timeline of Joshua’s IVIG procedures, how he stepped down on his prescriptions, and when you introduced the special diets?
    My son developed PANS in Sept. 2011 at age 7, was not correctly diagnosed until Aug. 2012, and had his first IVIG through Dr. K in Chicago in Sept 2012 with truly amazing results. In the past two weeks a rampant bout of strep has gone through his classroom and most of his PANS symptoms have come back – the OCD is constant, and the “brain fog” is continuous. Three weeks post-IVIG, he scored in the 97th percentile on statewide testing. This week, he refused to even try his end of quarter math assessment because he could not recall facts, names or images of numbers, etc. He is on a full dose of antibiotics, so I am surprised the exposure to strep has affected him. I am wondering if we will need to pursue another IVIG, like you did for Joshua.

  2. Mary Knoska says:

    Michelle, I know this is a year later but if you are still checking in here I would like to talk with someone about the IVIG with Dr. K. My daughter was recently diagnosed by him.
    Thanks,
    Mary Knoska

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