rmlyonsfamily Posted October 6, 2011 Report Share Posted October 6, 2011 We go back to Duke tomorrow for the first time since Kayleigh was discharged from the hospital July 25th. She looks fantastic, feels great, and endurance is improving every day. Sure, we still have some struggles, but she does well and pushes through them. I'm so afraid that I have a false sense of security and we're overlooking something! So afraid Dr. Kanter is going to hear that crazy heart rhythm that started all this, or her numbers will be low, or whatever.... I know it's crazy, but it's the nervous nilly Mom in me! LOL!Anyhow - send up some prayers for us tomorrow!Thanks! Quote Link to comment Share on other sites More sharing options...
mwise Posted October 7, 2011 Report Share Posted October 7, 2011 Hugs & prayers to you both. Good luck and hopefully you will have good news to share. Quote Link to comment Share on other sites More sharing options...
kclynn Posted October 7, 2011 Report Share Posted October 7, 2011 Hope it goes great! Has she been able to tolerate full time school? My son was spiraling down and we cut back to part-time and increased his florinef and he is back to stable, still potsie but also making his classes most of the time and having some social interaction as well. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted October 7, 2011 Author Report Share Posted October 7, 2011 Today went great!He said her EKG was still "tippy" - whatever that means! I did see it and it was still a strange rhythm, but he was ok with it. She had a 45 point spike in HR/BP from laying to standing when they did orthostatics. Again, expected. And her heartrate is still hanging in the 45-50 range.But...Overall he was VERY pleased with her progress! He was extremely excited that she is on the elliptical 4 miles 3-4 times a week without difficulty. He didn't change any medications because he said she looked so good he didn't want to mess it all up. Drew some labs and said if her potassium or sodium was off he "may" change them a bit, but didn't want to. I asked about when to call him for problems.... he was pretty clear. 1) Headaches that won't go away with a tylenol or go on for more than a few days2) If the dizziness returns3) If the sluggishness returnsOtherwise - we don't go back until June 1st!!!!Oh - the best news of all.....The college she wants to go to is in Denver, CO. There is a pediatric cardiologist there that came here to Duke for a year JUST to train under Dr. Kanter! He JUST returned back to Denver in July. So - when we get there (if she goes) he is going to get her set up with that cardiologist for continued care.:0)When we left he looked at Kayleigh, smiled, and said "YOU are the happy in my day! YOU are my success story!". Makes a Momma happy! Quote Link to comment Share on other sites More sharing options...
corina Posted October 7, 2011 Report Share Posted October 7, 2011 really happy for you and kayleigh happy momma! Quote Link to comment Share on other sites More sharing options...
cgnursegirl Posted October 25, 2011 Report Share Posted October 25, 2011 Hi, I live in NC and I am currently being treated by UNC Cardiology for POTS and NMS. I am 25 years old. I know your daughter is still a teenager, but I was wondering if you knew if there were any adult doctors who specialized in dysautonomia at Duke ? I have been helped somewhat by UNC cardiology but the wait to get in to see a neurologist who can do testing on the ANS is forever. The doctor who ran the autonomic disorders clinic at UNC is on an extended leave and another neurologist has taken over for her. I am supposed to get an appt with this doc, but I am being told it will probably be next year by the time I can get an opening. I am glad your daughter got such good results from Dr. Kanter. I live in the Wilmington area, and I know of a few young adults who were treated by him, and they highly recommended him, so obviously people come from all over NC to see him. Has Dr.Kanter mentioned who he might want to be your daughter's adult cardiologist if she decides to stay in NC ? Just wondering. I feel like I need to explore other options than just waiting for myself to get sicker and waiting forever to see a doctor. Thank you ! Quote Link to comment Share on other sites More sharing options...
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