txbriteyes

Thank you so much for the quick replies. How long did each of you stay there... I was told to be prepared to stay for 3-6 days or maybe longer. Did you have repeat testing done.. I sure hope we dont have to... There are just so many tilt table tests you can take.. LOL.. The cardiologist here wants to start my son on 40mg of inderal but i am concerned with his heart rate while sleeping in the 40's.... I have a call in to the Mayo clinic to see if they want us to wait to start the meds until we get there. WE have decided to stay in a short term housing apartment. It has 2 bedrooms, livingroom, den and kitchen... 2 miles from the hospital...with the shuttle included. I couldnt believe it was just under a 100.00 a night. They even stock your refridgerator.. LOL I hope to hear from you soon.. Patricia

Hi ... My name is Patricia I have Ehlers Danlos type 3,with severe Vascular Weakness, POTS and Chronic Fatique... my son amd mother have this also... My mother is 70, I am 46 and my son is 17. Only thing that has worked for me in the past have been iv hydration from a picc line.. After 7 picc lines in less than 2 yrs.... my doctors were getting concerned I might get a fatal infection... so now since i cant retain fluids I get mini strokes and kidney stones along with all of the other symptoms... Plus I have CDD which i need surgery on the c7 along with my unstable hip, which did not heal after a fall. My son stays so fatigued he has to be homebound schooled...He has lots of POTS issues also.. My doctor said the Ehlers Danlos caused the POTS. Our EDS is very severe.. we have lots of issues there also. We have had this our entire lives but was just correctly Dx'ed last year. It now explains everything we have been through...My doctor felt that the Mayo clinic is very up on EDS and POTS. I sure hope so... Hopefully we will be going next month or early Oct. We will know more tomorrow. I am a very up beat person and I know first hand it can always be worse....but I feel so badly for my son that it has hit him this hard....in the most important years of his life. I told him... we will get him feeling better... but unfortunately when you are so sensitive and allergic to so many things it takes a little longer....but we will get there. He had a pectus repair in Jan. and spent 34 days in hospital because he could not tolerate the pain medication due to his POTS.... Now he is still having pain because of his EDS. He misses being in school ... but we have the most wonderful homebound teachers...We call them our angels. I hope everyone has w wonderful day and I look foward to hearing from you. Patricia