Cautiously Optimistic

While Tyler’s condition remains the same, we had reason today to be optimistic. We met a new doctor, Dr. Stanbro, a psychiatrist. When our pediatrician strongly recommended we see Dr. Stanbro, we were a little reluctant. After all, we were already seeing a neurologist for pharmaceutical therapy and were on a waiting list for a top-notch psychologist who specializes in tic disorders. What more would a psychiatrist add to the mix? Besides, when I think of psychiatrists, I envision pill-pushers who put labels on kids like ADD, ADHD and OCD. (My apologies to any psychiatrists out there.)

But after meeting with Dr. Stanbro today, I realized why our much-trusted pediatrician was so emphatic about seeing him. First of all, I could tell he genuinely saw Tyler beneath the shroud of his illness. He didn’t give me an unbelieving glance when I said just a few months ago Tyler was a regular kid with no discipline problems who did well in school, as some skeptical (and uninformed and impolite) doctors have done. Nor did he try to place any label on Tyler other than “Tyler.”

Second, he had a very strong opinion about a diagnosis for Tyler. He said that he had a ton of experience with PANDAS. He did his studies at such-and-such institution in Boston, which I’m sure is quite impressive, but meant little to me at the time. He said my description of how Tyler’s illness has progressed along with his observations of him today made him nearly certain that Tyler has PANDAS. Not only does he believe Tyler has PANDAS, but he also presented a plan for treatment. In addition to the IVIG treatment Tyler already had in the hospital, which Dr. Stanbro said was great, he wants to put Tyler on long-term antibiotic treatment. Like at least six months long-term. Tyler’s PANDAS has such extreme symptoms that he doesn’t think even just the IVIG would cut it on its own. However, he really believes that between the IVIG and the antibiotics, we will see Tyler’s illness gradually disappear month by month.

So while nothing is still certain, we are now working with a doctor who not only theoretically believes that PANDAS could be real and Tyler could have it, but he has experience in successfully treating it. According to what Dr. Stanbro said today, we may not see Tyler return to us overnight like we would hope, but he feels fairly certain that he will return to us over the course of the upcoming months. That prognosis leaves us much more optimistic than the black hole of unknown illness for an unknown length of time. Dr. Stanbro also made a few tweaks in medications, and I feel confident in his recommendations.

Thank you for the continued prayers. Even if Tyler does have PANDAS and we have hope for an end in sight, the next few months will continue to be the most challenging of our lives.

So that’s it. That’s all I’m writing tonight, even though there’s more on my mind, because my birthday is almost over and I want to finish watching the American Idol finale. J Good night all!