Turning a Corner
image courtesy of Rani Garner
It has been a while since my last update on Maggie, but that doesn’t mean things have been quiet. In fact, there has been a lot going on in the background that I am very excited to tell everyone about.
With what we learned about how well Maggie took to drug X, we began to dig deeper in to why it was helping her so much. Pairing together that information with some major “putting the pieces together” from Kathi and Dax’s cardiologist, Maggie’s doctors had her tested for postural orthostatic tachycardia syndrome (POTS), a problem in the autonomic system. This syndrome is hereditary (Kathi and Dax both have it), but is oftentimes hidden until triggered by a major health issue. In December, the doctors and nurses were able to reproduce her exact symptoms. In Maggie’s case, these symptoms were mimicking seizure activity which were the clouding factors for doctors over the past several years. It was amazing to see what originally hospitalized Maggie in August 2008 reproduced and then halted.
In Maggie’s case, the location of her tumor is a major junction box for autonomic functions. With damage to that area and her already being pre-disposed to POTS, she was a lightning rod for this autonomic condition.
The great news is that this autonomic condition is easily treatable with a beta blocker and some easy to manage diet changes. We are still in the experimental stages of finding the right dosage, but over the past month and a half, Maggie has responded extremely well – so much so that Kathi and I took our first vacation away in 10+ years.
It is difficult to put in to words how big of a diagnosis this is. This time last year a hemispereotomy was on the table as the only other treatment options, thus the need to take some huge steps back and approach things slowly to ensure that the doctors were focusing in the right area. Had that happened, Maggie would still have the POTS problems, but suffering immeasurably more. Looking back, we can now easily separate Maggie’s autonomic POTS episodes from her seizures, which we think she may have had one to two real seizures over the past year. The Lords hand of protection was definitely over Maggie last year and this year.
Steven on February 3rd, 2010
Thank you for sharing, Rob. I’ll be sure to tell my kids. They will be happy to know this news. We are definitely praising God for the patience He has given you guys in waiting and searching and praying and hoping. Great is His Faithfulness!
Josh Einstein on February 3rd, 2010
Man that is AMAZING! I am so glad for you guys. You guys (particularly, Maggie) have been so persistent and strong through this and I am really humbled by what you’ve all been able to overcome. Maggie’s story will always inspire me and if/when we are ever faced with such challenges I only hope my family could stay as strong as yours.
sbt on February 4th, 2010
Rob, this is such good news! I can relate to the difficulty diagnosing problems with similar symptoms. For years, my father’s heart and circulatory issues to put down to nerve damage from spinal stenosis (bone spurs in the spinal column pressing on the spinal cord and radiating nerves.)
I am so glad you are discovering this so that Maggie can have more stability in her life and your whole family can breathe a little more easily. The way that you have handled all these troubles is truly inspirational, but it’s pretty exhausting to be an inspiration. I hope things will be easier for all of you now.
God bless you all!
Rob Bushway on February 4th, 2010
Thank you everyone – your prayer and encouragement over the years has been unbelievably strengthening
somename on February 8th, 2010
Awfully glad to hear that, Rob. I wonder if it might be that the newly treated issues were among the triggers for the actual seizures too…it seems the stress of those episodes might feed into the actual seizure activity somehow.
In any case, I hope this is indeed a corner-turning that will leave much darkness permanently behind us.
Dennis Rice on March 5th, 2010
Incredible. All of you.
Love ya bro. Miss ya.