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.
Sincerely,
Martin

3 comments:

CMK said...

Congratulations! I am so happy to hear that Suzanne is finally over her BPT. It is especially heartwarming to know that there will be a day when all the fear and worry that go along with an attack will be gone forever. Our experience with BPT is just begining. Sean had another attack just yesterday afternoon. I pray each time it happens that it is the last time. He seems to be on 3 week cycles right now. I can only imagine how elated you must be after having dealt with this for as long as you have. Best wishes to you and thank you for sharing your story.

Cheri said...

My daughter was diagnosed with BPT when she was 2 yrs old, experienced symptoms since she was 2 months old. My daughter is now 5 yrs old and is doing much better but still complains of dizziness and tells me her head/eye hurts. Just last nights she vomited 5 to 6 times. These episodes use to happen 1 to 2 times a week but now it’s 4 to 5 times a year. Even though the vomiting and head tilt has somewhat subsided she does still complain about her head/eyes hurting but this doesn’t stop her from playing or doing crafts (her favorite thing to do) the normal 5 yr old girl stuff. We have been to so many doctors that have disregarded our concerns and the frustration can be a little overwhelming. I hope to God that my daughter was given the correct diagnoses and there isn’t anything that the doctors are missing. She been through 3 MRI and many other test and I know that should be piece of mind but I can’t help but still worry.

Thank you so much for this website!

Cheri

About us said...

Can you help me. My 8 month old has been experiencing intermittent head tilting since 3 months old. Or atleast that's when it became noticeable. He started PT at 4 months old and last month our PT recommended a pedi ortho consult due to the head tilt switching sides. We went to Shriner's Children's hospital yesterday where the doc said my son didn't have traditional tort at all. I asked if he could have BPT because I had researched it online and the doc took that info and went with it, saying he's "sure" my son has it. Thing is, my son ONLY has the head tilt and my mother in law gets migraines. He has no other symptoms. We are going for a 2nd ortho consult next week and waiting to hear back from Boston Children's hospital regarding a neuro consult. Have you ever heard of BPT having so few symptoms? My blog is at www.heismyheartalways.blogspot.com Please advise, I'm so lost.

Tina