jekecana Posted July 16, 2011 Report Share Posted July 16, 2011 Do you guys normally see progression in your dysautonomia or does it stay pretty stable from year to year? My 5yr old has NCS (dx at 9mo, pacemaker at 19mo) and has a pacemaker for bradycardia & heart pauses. While he's always had a little bit of issue with temp regulation (turns blue w/ chattering teeth in pool -while hot outside within 15mins while everyone else is fine), he seems to be doing a bit worse this year. We've had several episodes this year where he has been out in the heat- not running, just sitting in a baby pool or playing quietly and the next day he is completely wiped out.. Or when we go to the pool, it's not 15mins before he's chattering, it's now by the time he gets to the bottom of the steps. Prior to summer, he used his pacemaker only less than 1% of the time as it just kicks on when his heart would want to pause so he wouldn't pass out.. In the past month, it has switched to pacing 6% of the time.. I'm fairly certain it's due to the heat issues.. Any thoughts? I'm just kinda wondering if this is going to keep getting worse or will level out. Quote Link to comment Share on other sites More sharing options...
abetterjulie Posted July 17, 2011 Report Share Posted July 17, 2011 I wish I had answers, but I don't. Heat is a huge factor for me. Even if I stay in the AC, if it is hot out, I am still worse. Also, I would think that the metabolic energy use by a child when growing would be a factor, also. That is just a guess, though. I would be sure he is getting enough calories for his exercise/energy level. I would also definitely bring it up with your cardiologist. I wish you the best of luck. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 17, 2011 Report Share Posted July 17, 2011 Chaos,Wow, i could not imagine having a 5 year old with these issues! You are brave! I don't have much info to offer, but heat is a dead killer for me. I can't be out in it more than 5-10 mins without getting freakish sick, heart fluttering, pass outish, weak like death...... hate the heat. I will have to say though, my 'progression' has been up and down these past 8 or 9 years..... I can have short periods of what i call 'remission'.... but overall, i have noticed each year gets slightly worse than the year before for me. I see myself becoming more less able of doing things each year. These past 2 years have been mostly bedridden for me, and im a go-getter, so this is hard for me. But don't let that scare you, as it seems many here do get better, and of course, many don't. I have made minor improvement since I fired my old doc and got accepted as a patient with a rare case doc in our area, he accepted me last dec and with him i've made small improvements.. sometimes a step forward and 2 steps back, but im glad i have a doc who will try different things..... I am hoping, with his help, that i can slowly improve still, and i believe i will... .but it will be a long and drawn out process...... Think positive.... or at least, try too.... hugs to you tennille Quote Link to comment Share on other sites More sharing options...
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