A Rare Gem

Over the years Hannah has probably seen around 30 specialists.  Very few have been note worthy.  We recently heard of a pediatric cardiologist at Johns Hopkins Hosp in Baltimore that had knowledge of POTS and the ability to diagnose.  However, she is not accepting new patients.  On a whim & a prayer, I emailed her directly and explained our situation and Hannah's symptoms and asked her if she would PLEASE see Hannah or direct us to someone who would. Dr Crosson promptly replied to my email that she would be willing to see Hannah & access her.  She told her staff to get us in ASAP.  While at our first visit, she explained that she understands the difficulty of finding a dysautonomia specialist and she could see that Hannah desperately needed someone to care for her with knowledge and perseverance.  Dr Crosson agreed to be that special someone for Hannah!  We were so very grateful!  She explained that this will be a long and complicated road at times that needs close monitoring & support.  She is willing to manage Hannah's symptoms and medications through email, phone, and office visits.  She layed out a clear plan to get Hannah on 3 meds by the end of summer. Hannah started the first medication (Florinef)  almost 2 weeks ago.   We have noted slight improvement of her symptoms and less "bad days". However, since starting the med she also had a very scary 24 hours of irratic blood pressures, nausea, and unable to function.  This latest episode came on during dance class and took approx 24 hours to subside.  We believe it was exercise induced, however exercise is crucial for POTS patients.  During this scary 24 hours I was extremely anxious as I watched Hannah's BP soar to dangerous levels and drop to near syncope levels. Dr Crosson was out of town at a medical conference.  I left her a voicemail and email even though her auto-message stated she would be unavailable until Monday and I should contact an on-call physician. I knew even the on-call physician would not be knowledgable or helpful.  Much to my pleasant surprise Dr Crosson contacted me within 15 minutes of sending her the message.  She completely set my mind at ease and gave instructions on how to handle the situation. I literally cried with joy & relief that we finally found a doctor who truly cares and is willing to go the extra mile.  A RARE GEM! I have communicated with her Friday, Monday, & today.  She is right on the ball.  She is starting Hannah on the 2nd medication (Midodrine).  This medication will help constrict her blood vessels to get better blood flow & prevent the extreme blood pooling she is experiencing. This is a tricky medication because it needs to be given 3 x a day exactly 4hours apart and must be completed each day before 5pm.  She can not lay down on this medication.  I will have to monitor her blood pressure closely on this medication to start. We are praying that we see significant improvement with the Midodrine and that she does not  suffer the bad side effects.  Your prayers are welcome!  We thank God for the answered prayers of finding Dr Crosson.  May God bless her!