14 yr.old son diagnosed yesterday

[renidrag]

It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale

[blessed2bamommy]

It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale

This is so encouraging to read. Thanks for sharing.

[annekat]

Well, that's cool that your son Alex is a nurse! Perhaps he can take some of the weight off you as far as figuring out what Wegs is all about and how to deal with it. If he has the time, that is.

[CarrieG]

It can take some time but drug free remission is possible, been almost three years for me. The best to you and Sam.
Dale

How long did it take on the drugs to be able to get off of them?

[renidrag]

Remember, we are all different, I was diagnosed August 14, 2009 and was WG drug free on June 30, 2010. I am 61 yrs old now and still have to deal with fatigue, neuropathy and other aches and pains, however I feel Sam will not have to deal with a lot of things due to his age. I had a lot of years of smoking and being a plumber with all that goes along with it. Youth will be on his side.
Dale

[Evie22]

I was diagnoised in 1996 and was into remission with 18 months, but caught a flu, and had to go back on meds. for another six months, and since then no meds. at all. So fingers crossed for your son that he will be improving real soon.

[me2]

I don't want to brag... but no one is doing it for me. I was blessed with WG over thirty years ago. I was near death. 6' tall and 122 lbs going into the hospital. Kidneys failing.
Cytoxan was the only treatment. I did almost two years of daily oral Cytoxan until I had blood in my urine. I then enjoyed twenty years of drug free remission and good basic health.
Now the treatments are even more advanced and there are a LOT more doctors that know how to treat WG.
Your story could end up being even better than mine.

[annekat]

So true that everyone is different. It sounds like Dale did exceedingly well to be off all drugs in less than a year. That is pretty amazing to me, but shows it is possible. And that Kirk was in remission for 20 years is also very impressive. I feel I have done very well with my Wegs and responded well to the drugs, but I'm still on them after 2 years, though no longer on the original CTX but on the milder MTX instead. I was dx'ed at 58 and am now 60, and I don't know how differently younger people respond to treatment than older ones, or how much of a factor age is. I think you will feel better when you start to see Sam's symptoms improve once he has been on proper treatment for a couple of months. The problem is that many of us do need to stay on the drugs because they are what is keeping the symptoms under control. Take all the encouragement you can from those who have indeed gotten into remission and off the drugs.

[Alysia]

. I was blessed with WG over thirty years ago. I then enjoyed twenty years of drug free remission and good basic health.
.

wow, this is very impressing and encouraging ! any "tips" how you did it ?

[Rini]

Carrie, you and your son sound like a great team, and you complement each other with your very different personalities. I think it's likely that he will pick up some your headstrong characteristics as he learns to deal with having Wegs. And you may soften up a bit, too, who knows?

I got the feeling in one of your posts you hadn't told him yet.... maybe you have by now. But I was thinking about how one would go about telling a young person something like this. I know he already knows he is sick, and may be relieved, as many of us were, to know the cause. I guess I would start out not by saying the scary name of the disease but by explaining that it is a disorder of the immune system, that it is rare, but that more and more people are being diagnosed, so he is far from alone with it, and of course that docs are getting better and better at treating it and people are doing better than ever at living with it. And there are other people his age who have it, some have been on this forum, and I'm sure there must be some in your general area. Perhaps he could meet some of them. Also, once things are better under control, he should be able to resume all of his activities, the artistic and romantic pursuits. It is not contagious! But he does need to be careful about catching germs from others while using immunosuppressant drugs. I have been in public a lot and NOT caught things, but it is quite possible, and precautions should be taken. But that needn't ruin his social life if he is careful.

We would love to hear from your son here on the forum if he is ever up to it! Though I understand, from his point of view, we are a bunch of oldsters. We do have Rini on here, who I think is in her late teens and somewhere in the midwest; you might check her out on the Wegs map link at top of page or the members list.

Best wishes to you both as you come to terms with this!

Ya im sorry I have been off. Doing college The hardest part is rapping the idea around my brain. Getting diagnosed can seem bad but It was something I fought for. Now that you know what it is you can handle it better. Once all the body symptoms quite down and I got used to my new body (it really is like mutating), It is just hard to digest and take in the changes. This really just makes people stronger from all the people I have talked to on this forum. Climbing mount Everest or just walking out of the hospital to a plain to Mexico followed by college. This ordeal is often the hardest for the people on the outside who are unable to just put it all back to the old way. I have found a lot of younger people in the US tend to run on facebook? I really hope the diagnosis leads to the right drug and he starts feeling better quickly!