Kitty Posted December 26, 2008 Share Posted December 26, 2008 Does anyone know of a good web forum where you can post a note about a health issue?I have a daughter who has a serious recurring but undiagnosed medical condition and want to see if there are other children with the same problem. I know that I should do a web search but I have dashed home from hospital, where she is at the moment, and don't know where to start in the little time that I have before I go back to see her.Any ideas anyone??? Link to comment Share on other sites More sharing options...
Russethouse Posted December 26, 2008 Share Posted December 26, 2008 http://www.undiagnosed-usa.org/factsheet.htmhttp://rarediseases.info.nih.gov/GARD/TipsForAnUndiagnosedCondition.aspxhttp://www.medhelp.org/tags/show/35956/undiagnosed-conditionsWithout any clues as to the nature of the condition these are the best I could come up with - Good Luck with it, I'll keep looking. Link to comment Share on other sites More sharing options...
Cat Posted December 26, 2008 Share Posted December 26, 2008 You could also try using the symptom checker here, and then posting on one of their message boards. http://www.wrongdiagnosis.com/Good luck. Link to comment Share on other sites More sharing options...
Russethouse Posted December 26, 2008 Share Posted December 26, 2008 http://209.85.229.132/search?q=cache:p70EqiHGAo8J:www.parent-2-parent.com/forum/forumdisplay.php%3Ff%3D61+forum+for+children%27s+undiagnosed+conditions&hl=en&ct=clnk&cd=8&gl=ukMight help......?Lots of the sites link back to SWAN (symptoms without a name) which has a yahoo group, you need to join to be able to view as far as I can see. Link to comment Share on other sites More sharing options...
Kitty Posted December 28, 2008 Author Share Posted December 28, 2008 Thanks RH and Cat. I'm trying them all. I have dashed home again from hospital. She was admitted on Christmas Eve and one of us has to be with her at all times because she is so poorly.She suffers from serious periodic vomiting, a condition whereby if she starts to be sick (this time, it was a gastric bug that started it off), her body cannot stop naturally. She needs anti-emetic drugs but they are not working. This is her 9th hospital admission for the same problem (kicked off by sea sickness, food poisoning, anaesthetic etc etc). She is racked with pain - it's awful to witness. Link to comment Share on other sites More sharing options...
Kitty Posted December 28, 2008 Author Share Posted December 28, 2008 I've been looking at them all. They are really interesting and I have been printing out relevant pages to read when I go back to the hospital.What I could also do with, I think, is a Forum like this one but on health. A Forum that has lots of traffic so that someone can point me in the right direction. The doctors do not know which anti-emetic (anti-sickness) drug to give her this time and have been asking me for advice. I remember reading one for airline pilots once and was wondering whether there was one for doctors, perhaps (whether I would understand it though....) ??Thanks so much for your help. I don't have much time when I come home ... Link to comment Share on other sites More sharing options...
Cat Posted December 28, 2008 Share Posted December 28, 2008 From what you have said about your daughter in the past, and what you say now, I would imagine that you have already considered the possibility of her having cyclic vomiting syndrome?Googling for forums on this subject brings up this listEDIT, this forum looks helpful http://www.websitetoolbox.com/mb/cvsa?forum=16057It is part of the American site here which also has a PDF detailing treatment and drugs to use during episodes of vomiting... http://www.ch.missouri.edu/fleisher/2008%20Empiric%20Guidelines%202045.pdf Link to comment Share on other sites More sharing options...
Kitty Posted December 29, 2008 Author Share Posted December 29, 2008 Thanks Cat. Cyclic(al) vomiting syndrome - CVS - has already been ruled out because there is always a logical reason why the vomiting starts (food poisoning, a gastric bug, anaesthetic etc). It is probably more to do with her severe learning difficulties. For some reason, which doctors are unable to fanthom, children (and adults) with learning difficulties can have intestinal and gastric disorders.The leads that you have highlighted are helpful. Link to comment Share on other sites More sharing options...
cooperlola2 Posted December 29, 2008 Share Posted December 29, 2008 CathyGiven the warmth I have felt on here in recent months, it behoves me to wish you an early successful resolution of your little one's torment. I know a little about hospital visits, having made about 90 since August, but mine were/are to an adult making visible progress. I hope they twig the problem soonest and give her her life back pronto - thus doing the same for yours. Learning difficulties are bad enough, but they can be managed, or at least worked-round - this sounds absolutely horrible.Ian Link to comment Share on other sites More sharing options...
sueyh Posted December 29, 2008 Share Posted December 29, 2008 Best wishes for your little one's speedy recovery. Happy, healthier, New Year.Suey Link to comment Share on other sites More sharing options...
Russethouse Posted December 29, 2008 Share Posted December 29, 2008 http://www.healthboards.com/boards/index.php?gclid=CLP8g_-E5pcCFcse3godVTQwCwThis looks like a busy health related forum (not sure if has been mentioned before)Hope things are improving Link to comment Share on other sites More sharing options...
JSA Aude Posted December 29, 2008 Share Posted December 29, 2008 Best wishes for your liitle one - speedy recovery for you both. We had a problem years ago that they couldn't pin down, fortunately it didn't repeat itself in a later age. x Link to comment Share on other sites More sharing options...
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