Ro-bear Posted November 19, 2013 Share Posted November 19, 2013 http://www.dinet.org/pots_an_overview.htm My daughter was a healthy active 17 year old. Now she is practically bedridden. I'm going out of my mind with fear; everything I read about it fills me with despair. But we're early on in this thing. Maybe they will find a cause for this and address it, or maybe she go back to the way she was. I don't know much, and I can't do anything. If anybody knows about this I would really like to know. This is seriously messing with the whole family. Link to comment Share on other sites More sharing options...
Overcame Faith Posted November 19, 2013 Share Posted November 19, 2013 So sorry to hear about this Ro-bear. I am sure it is terribly difficult on you, your daughter and your whole family and many friends. I read what you linked because I had never heard of the disorder. I found this part to be quite positive and perhaps will give all of you much needed hope: "Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006)." I hope all goes well and best wishes to you and your family. 2 Link to comment Share on other sites More sharing options...
SilentLoner Posted November 19, 2013 Share Posted November 19, 2013 I'm so sorry to hear that. I hadn't heard of it before. Link to comment Share on other sites More sharing options...
Super Moderator florduh Posted November 19, 2013 Super Moderator Share Posted November 19, 2013 Sorry to hear about that. Link to comment Share on other sites More sharing options...
RipVanWinkle Posted November 19, 2013 Share Posted November 19, 2013 I am so sorry for you and your whole family, particularly your daughter. I wish you all the best of luck. bill Link to comment Share on other sites More sharing options...
mwc Posted November 19, 2013 Share Posted November 19, 2013 My only suggestion would be to find an expert in POTS and follow up with them. mwc Link to comment Share on other sites More sharing options...
Super Moderator TheRedneckProfessor Posted November 19, 2013 Super Moderator Share Posted November 19, 2013 Ro-bear, if there is anything I can do for you or your family, please don't hesitate to ask. Link to comment Share on other sites More sharing options...
BrotherJosh Posted November 19, 2013 Share Posted November 19, 2013 Shit man, I'm sorry to hear about this! Link to comment Share on other sites More sharing options...
slave2six Posted November 20, 2013 Share Posted November 20, 2013 The best thing you can do right now is don't freak out. Your daughter will be relying on you to be positive and upbeat as much as possible. This really sucks but you have to be strong. If you need someone to talk to and vent with, you can contact me directly or let us know in this forum. You're not alone in this, OK? It appears that there is no one medication or therapy that works for everyone who has POTS. I'm afraid you're in for a potentially long run here. The good news is that there are potential remedies that can be tried. You're just gonna need to hang in and hope that you land on the right one sooner rather than later. I don't know where you live but a lot of states have really good homeschooling programs that include meeting with teachers etc so that the burden of education does not fall on you. This will keep her active and keep her from going stir crazy if she can't get out of the house much. If you need to raise funds to help care for your daughter, you should set up a Crowdfund site send the link to everyone you know. I would certainly contribute as would many others here (as well as other friends and family). The financial aspects of this can be alleviated through one of these sites. I have used one in the past. Basically, you set it up along with a PayPal account and the site takes a small percentage of the funds that have been raised. If you need help setting this up, let me know. I'm so sorry to hear about this Ro-bear. Remember that you are not alone in this. Please keep us informed on your daughter's condition. Link to comment Share on other sites More sharing options...
par4dcourse Posted November 20, 2013 Share Posted November 20, 2013 Chin up, brother. We're here for you. Link to comment Share on other sites More sharing options...
Super Moderator buffettphan Posted November 20, 2013 Super Moderator Share Posted November 20, 2013 Ro, I'm so sorry you all are going through this. Feeling helpless to relieve the suffering of those we love -- especially our kids -- is frightening and frustrating. You know we'll do anything we can for you. Link to comment Share on other sites More sharing options...
Lilith666 Posted November 20, 2013 Share Posted November 20, 2013 That sucks. I don't have children, so I can't relate, but that is terrible. Keep us posted, OK? Link to comment Share on other sites More sharing options...
pawn Posted November 20, 2013 Share Posted November 20, 2013 That link says there is treatment available... I hope she gets it, and gets results. Wishing her well, hang in there Robear! Link to comment Share on other sites More sharing options...
wanderinstar Posted November 20, 2013 Share Posted November 20, 2013 Really sorry to hear that. Must be awful for all of you. You are not alone Ro. Link to comment Share on other sites More sharing options...
pawn Posted November 20, 2013 Share Posted November 20, 2013 Judgemental preachy post was removed... So I am removing my response.... Thinking of you Robear. I hope things get better. Link to comment Share on other sites More sharing options...
Fernweh Posted November 20, 2013 Share Posted November 20, 2013 MikeGlass: Just a suggestion, but how about you pay more attention to the beam in your own eye instead of the speck in your brothers; as your own book would say. Link to comment Share on other sites More sharing options...
Super Moderator florduh Posted November 20, 2013 Super Moderator Share Posted November 20, 2013 MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. Ye shall not post the Bible, neither shall ye preach. You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason. Got it? Link to comment Share on other sites More sharing options...
Guest end3 Posted November 20, 2013 Share Posted November 20, 2013 Hoping for the best R. Hang in sir. Link to comment Share on other sites More sharing options...
leopardus Posted November 20, 2013 Share Posted November 20, 2013 That one's new to me. The Mayo Clinic web site is great for information. Here's a link to the treatment part of their page on POTS. http://www.mayoclinic.org/medical-edge-newspaper-2010/jun-11a.html The upside is that it usually resolves by the early 20's. There are also treatments for it including medications, exercises, and diet. If you want help with information, feel free to pester me. I create medical education materials for a living so I'm quite good at finding information and helping people to understand it if necessary. While you're dealing with this, do keep strong for your kid. She'll need it. You should probably learn a bit about dealing with depression in case it hits her or others of the family. Find the best expert you can to help her (or find a doctor in your area who will consult with a distant expert). I do know a lady who has a similar kind of disorder (she's wheelchair bound) who teaches martial arts (she's a 5th degree black belt and a badass). So with work, even a disorder like this can be dealt with well. I could find contact info for Lynda if you wish. FWIW, I have a son with Down Syndrome, so I know well the stresses of dealing with something like this. It's hard, but it's doable. Keep close to friends and take help and support wherever you can get it. Mostly, love that kiddo a bunch. Link to comment Share on other sites More sharing options...
Guest MikeGlass Posted November 20, 2013 Share Posted November 20, 2013 MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. Ye shall not post the Bible, neither shall ye preach. You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason. Got it? Who was preaching? I offered this man, who said he and his daughter was suffering a way to be healed. If your positions on here are so valid and true, why did you remove my post? If you are right, then you should be able to defend yourself without any problems. Link to comment Share on other sites More sharing options...
Guest MikeGlass Posted November 20, 2013 Share Posted November 20, 2013 MikeGlass: Just a suggestion, but how about you pay more attention to the beam in your own eye instead of the speck in your brothers; as your own book would say. I do that as a matter of fact. I find it interesting that you equate someone offering prayer and healing, with accusing someone of sin. I guess you have not had good experiences with "Christians." Link to comment Share on other sites More sharing options...
Fernweh Posted November 20, 2013 Share Posted November 20, 2013 MikeGlass: Just a suggestion, but how about you pay more attention to the beam in your own eye instead of the speck in your brothers; as your own book would say. I do that as a matter of fact. I find it interesting that you equate someone offering prayer and healing, with accusing someone of sin. I guess you have not had good experiences with "Christians." Your post that was removed was full of your own personal judgements that you cherry picked from bible verses. I didn't accuse of you sin. I don't even believe in such a concept. I was making the point that anyone can cherry pick scriptures and that we on this site know the bible inside and out. Link to comment Share on other sites More sharing options...
Super Moderator florduh Posted November 20, 2013 Super Moderator Share Posted November 20, 2013 MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. Ye shall not post the Bible, neither shall ye preach. You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason. Got it? Who was preaching? I offered this man, who said he and his daughter was suffering a way to be healed. If your positions on here are so valid and true, why did you remove my post? If you are right, then you should be able to defend yourself without any problems. I didn't say you had preached yet, I said not to do it. I also hid a subsequent post that reposted your original Scripture lesson; this isn't the time or place for that. You should probably hang out in the Lion's Den for now. This is a community of Ex-Christians, many of whom need a safe place to heal from religious abuse. We understand that you, of course, understand True Christianity and we left the fold because of those other bad Christians; you have Truth to share. I get it. Just do it in the Lion's Den, okay? You do understand what the term Ex-Christian implies, right? Link to comment Share on other sites More sharing options...
LivingLife Posted November 20, 2013 Share Posted November 20, 2013 Hey Ro-Bear, hope it all pans out OK, never heard of this disease and as such cannot offer any wisdom. I hope it is treatable and she gets well. Link to comment Share on other sites More sharing options...
Ravenstar Posted November 20, 2013 Share Posted November 20, 2013 So sorry Ro, my thoughts are with you and your family. Hope all goes well. Link to comment Share on other sites More sharing options...
Recommended Posts