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From: Becca
Samantha,
It sounds like your son has it much milder than I do - that is brilliant!!! You mentioned that his coaches are concerned about team sports, well there isn't really any need, unless of course exercise is definitely one of his triggers - is that when he has passed out when playing? He and you are the best judges of things he might not be able to do.
Things you definitely should not do:
Be held upright when passing out (or anything that would hold you upright if passed out e.g. skydiving)
But that is it for the definites. Things like swimming are out for me - but then I am more symptomatic than he is. I need my stool because my body just doesn't do walking around.
One thing I will say is that I desperately wanted to be a fighter pilot but have had the dream shattered - sometimes our health won't let us do what we love. If exercise makes him ill he will have to stop doing it at a high impact level - believe me he does not want to make the condition any worse than it is, but the good news is he could do other sports so all is not lost.
Most people do grow out of it. Some don't but most do - so let that be some comfort to you.
~You said~ I dont ever want to tell him that he cannot do something. I understand he has to have certain restrictions but have always raised my kids to be high achievers. ~end~
I understand that, but if the diary keeping shows something is triggering it then it would be easier if you could have a word with him about stopping what is causing it, if possible. Because it's a lot easier to hear those things from your family than doctors who tend to be less than tactful about these things.
~You said~ With the testing that is ongoing and will continue in the next months, hopefully they can fully diagnose this as RAS rather than VVS and hopefully something we will find will help him function completely normally (meds or pacemaker). ~ end~
Possibly. The two are fairly interchangable actually depending on who you speak to. Bit of advice, try the salt thing, the diary and keeping him hydrated (can solve it for alot of people).
Do not be disappointed if the testing shows nothing. It does happen. But there are people who are specialists in the field and they accept referrals. Meds are the way to go, pacemakers are controversial and I know of people who have had them but still pass out because the problem is with their blood pressure dropping not their heart rate (mine is caused by both bottoming out).
~You said~ I am trying to stay optimistic but am just being ripped apart inside about this. Thanks for all of your help and the best of luck to you. ~end~
It is hard. I appreciate that. Thing is to see what the testing shows, if it shows nothing try not to be too disappointed. It isn't a death sentence, there are far worse things that could be happening. It can be a pain, but with a supportive family and doctors you can both come through it easily.
I've spoken to Trudie who runs STARS and if you join then you can access the chat room/forum there - the fee is a pittance for the help and support they can provide you with. You can also email Trudie (trudie@stars.org.uk) for advice and a sympathetic ear. They are worth joining and I think she could especially help you because her daughter had the condition (it was why stars was set up) so she could give you a parents perspective which of course I cannot.
I should add that I am going through a hard time at the moment (coming to terms with the death of a friend) and am not my usual self - so it is possible my picture of my condition is (unintentionally)extremely gloomy - another reason to contact Trudie.
You could also try http://www.ndrf.org there are many people on there and that forum does allow for private messaging which of course this one does not. Also there is a special section for children (adults not allowed) which could be a good place for your son to get some support maybe? There are people there with worse conditions BUT they are wonderfully supportive.
I do think Trudie is your best bet though.
You can of course still mail me here - I don't mind I'm not pushing you away so please don't think I am I just wanted to let you know why my posts may be unusually gloomy.
Anyway, take care, let me know how the testing goes and remember YOU ARE NOT ALONE.
Becca.