Tuesday, December 30, 2008

BPT - When is it finally over?

The medical literature we have found that accurately depicts our experience with BPT had patients whose symptoms resolved "spontaneously" anywhere from 2 to 10 years later. I have reason to believe that many, many of the anecdotal references and comments about BPT - like in Web MD - merely plagiarize and repeat an inaccuracy from one or two articles about one patient that states BPT resolves within two years, and is not accurate or scientific. The truth is that there are few documented, well studied patients since 1949, when the original diagnoses was accurately made. The fine folks that have replied to our blog have patients experiencing BPT as young as birth and up to ten years, so please just take it one day at a time, because it is my opinion that no one knows how or why it starts or when it ends.
It is with GREAT PLEASURE that my wife and I can comfortably say that Suzanne has "spontaneously", but only after 10 and one half years, resolved her BPT!
The only lingering symptom is one of migraines -just like in the medical literature. Her migraines are different in severity each time, but usually do not last more than 24-48 hours. One or two Advil usually help her through the headache. Only sometimes does she experience an aura like feeling. also, her migraines are not regularly spaced like her BPT episodes were. She actually was very proud to get a nine week Perfect Attendance Award for the first time in her life this past spring semester (2008)!
So, when is it over? We waited anxiously for one cycle of 12 weeks, then two, then 3 before we were convinced that the worst was over. The feeling is fantastic. Remember, each patient is unique in this aspect and some of the 20 families worldwide that have written us have similar cycles, no cycles, and even patterns that have more or less days between the vomiting, head tilts, etc.
I am going to keep this site open because of the need to help Doctors identify this rare "disease" that even pediatric specialists have probably never heard of it, much less the family practitioner. Please post your experiences or write to my e-mail site. We love to hear and respond to everyone. Oh, and remember, computer crashes are part of our lives now, and we may have lost your contact information, so please don't give up if you want a reply or information.