One more life-threatening medical condition to add to the list...Wolff Parkinson White Syndrome

Well, Dakotah was diagnosed with Wolff Parkinson White Syndrome last Thursday but it has taken me this long to be able to type it because it makes it more real.  I am still digesting that now her heart has a genetic defect.  I still don't know everything about it so I won't even try to explain it.  The best thing for me to do at this point is to refer you to the web to find out about it.  The cardiologist said that for now we will monitor her since she is non-ambulatory.  If she were a "typical" 15-year-old, they would do an ablation procedure that would prevent her heart from having irregular rhythms and accelerated heart rates.  What concerns me is that her heart rate increases when she has her nightly seizure (or any seizure) so if her heart kicks into an even higher heart rate during a seizure, she could go into cardiac arrest.  I was told by the cardiologist that if she goes into the 170s, then to call 911.  Luckily I have a pulse oximeter so I can monitor her heart rate and it alarms very loudly so it will wake me.  For now we wait for the 24-hour holter monitor results to see if she needs to be put on any medications.  They want to try to avoid any more meds since she's already on so many for the epilepsy and Hyperoxaluria.  Sometimes I just ask myself, "When will enough be enough for her?"