So last post I mentioned that we were headed to New Jersey to see an "expert" in PANS/PANDAS. The trip went as well as one can go and it was humbling to meet Dr. Trifiletti (Dr. T) and all the brilliance he brings to this disorder. For Brayden, he added another antibiotic and more lab work. For Teagan, just more lab work.
The results showed that Teagan had both a current and past infection to the Coxsackie virus, type B, and antibodies for a past infection to Type A. Type A is commonly known as hand, foot and mouth disease. Brayden had antibodies forming for Type B. It is interesting how the human body works. Neither of my children have ever had symptoms of either virus that I'm aware of yet their body is fighting it. Both were prescribed an antiviral to stop the process.
Teagan's labs showed again many "interesting" things that unfortunately required yet more lab work that is still pending. She continues to intrigue every doctor she encounters with her lab results and clinical presentation. Dr. T did a great job of explaining the possible connection to Teagan's fever disorder as a toddler and her current symptoms. Apparently she has an immune marker now that is common among children battling the fever disorder she had as a toddler. That is why you pay this man the big bucks, to find connections like that. His current theory on Teagan is called an "alternative fever response". Instead of battling infections with a fever, she develops untraditional symptoms to viruses attacking her body. I'm still learning about this "alternative fever response" hypothesis and hope to post more on it later. All I know is she doesn't get a fever anymore for any illness and that is not a good thing!
For now, this is all I can provide for an update until we have another phone consult with Dr. T. He ordered extensive genetic testing, lyme testing and many other tests. We talk again in 10 days. The wait never ends!