Son is hospitalized...

[Deathpool]

I hope he continues getting better too.

[Werewoman]

Thanks DP. Let's see, it's been 5 days since we've had to take him to either a hospital or Dr.'s office...that's a record!

PROGRESS! YES! *fist pump*

[Grimward]

And now it's been 11, hopefully. On a roll, yes?

[Esioul]

I'm glad your son is getting better, I'm sorry to hear he's been ill.

[Werewoman]

Originally Posted by Grimward

And now it's been 11, hopefully. On a roll, yes?

So far...but I'm not ready to let my guard down just yet....

[Werewoman]

...and still haven't, I'm afraid.

Actually, since my last post, this is now his second and fourth total visit to the CVICU. I stopped posting because I couldn't deal with not knowing what was going on with him anymore and didn't think it was fair to drag my friends through all the uncertainty but now I think we may have an answer...finally.

It's starting to look more and more as though he has lupus although it's very rare in adolescent males. We should know by next week once and for all.

The effusion came back with a vengence in August, but not so bad that he had to have the surgery done again. Still, he was here for several days while they got it back under control. Then 3 weeks ago, it started up yet again, but they didn't admit him. Yesterday, they did, though. We were prepared to refuse to take him back home unless they could tell us once and for all what is wrong with him. I'm not bashing the doctors here by any means. These people are fantastic, it's just that his symptoms keep changing and that's what's got everyone so concerned, thus the possibility of an auto-immune disorder even though he doesn't have all the markers for one.

Anyway, since I had a little time to myself tonight, I thought I'd pop in and say 'HI' to everyone. I miss y'all so much, but until I am gainfully employed again, I won't have regular internet access, so bear with me.

*hugs*

WW

[Karn Maeshalanadae]

Oh, god, lupus?!?! That can be pretty serious....

All I know for sure about Lupus is that it's an autoimmune condition. I THINK it can affect the brain, but I'm not entirely sure about that, I'll have to do some research on it. But any autoimmune....best keep close watch. I don't think it's as bad as MS, but don't take any chances with it until it can be ruled out.

[dustinzgirl]

WW---we all care about you and don't feel like we are being dragged along at all.

I really hope the best for your family and your son, I'm sorry you have to go through this stress and worry.

[thepaladin]

Missed the beginning of this and just picked up as the new post marked it. Don't know that I can say anything, but thoughts and prayers are with you.

[j. d. worthington]

I've known several people with lupus over the years and, with proper treatment and reasonable caution, it doesn't have to curtail a "normal life" (whatever that is) too much -- just thought I'd let you hear that, as a piece of encouragement. Once it's identified, the proper regimen for treatment and/or personal management can also be arranged, which allows for a certain peace of mind. It does not mean, of course, that this isn't serious, or that it doesn't act up and cause problems at times; but it does mean things can be controlled much better.

I'm sorry to hear about it, all the same, as nothing like this is ever good news; but I'm glad to hear that an identification may finally be accomplished, for the reasons stated above, and for the ability that will give all of you to once more have some power to deal with the situation without quite so much stress....

Best wishes to you all, and keep us posted when you can....

[Ursa major]

Yes, WW, best wishes to you, your son and all the family and I hope everything goes well.

[Werewoman]

Thanks everyone! My dad's best friend has had lupus for years. He obviously has ALL the markers. My son simply isn't old enough yet to have them all, since one marker in males is being overly tall with very long fingers like my dad's friend has. My son is 6'1" and still growing though not nearly as fast as he once was, so for all we know, he could end up that way though the geneticists don't think he'll get much taller than 6'2" or 6'3", but who knows. According to such things my 25 year old daughter might have been 5'9" but turned out to be 5'1", so who can say?

I agree, j.d., that it is manageable and treatable and that he can go on to do most things he wants to do with his life and his only concern is that it might exclude him from the military, but because of this whole experience, he's considering the possibility of going into the medical profession as an alternative, which is cool because there was a time when he would have been devastated to learn that he could not become a soldier or police officer.

As far as coping with it? You learn with time. I've seen other parent's here going through much worse so it's easier to keep things in perspective than it was when all this first started.

I'll try to keep y'all up to date as I can.

Thanks again!!

[j. d. worthington]

Originally Posted by Werewoman

...his only concern is that it might exclude him from the military, but because of this whole experience, he's considering the possibility of going into the medical profession as an alternative, which is cool because there was a time when he would have been devastated to learn that he could not become a soldier or police officer.

That's a big step in coping with it right there. If he is already making that adjustment, then a large part of the psychological battle has already been won; and that, in turn, will make the physical aspect of dealing with it considerably less onerous.

Good kid! And, again, the best to all of you through this whole thing....

[BookStop]

Aw, shoot. I was hoping you hadn't posted ont he thread in a while because he was doing so amazingly well it didn't seem so pertinent anymore. If they've got an actual diagnosis, you guys can finally get a little relief, though I imagine you'd rather they had even better news.

Your son sounds like an amazing person, and I bet he'll accept and adjust even quicker than you all will. Give him my best hopes for an easier time now (and that goes double for you!)

[Grimward]

Good friend of ours has lupus too, and with the aforementioned attention paid (as she does), you'd never know it. I kind of had the same take as Bookstop, so firing up the good will engine again for you, your son and your family, double dub-yah. Hang in there!