Mom of Newly Diagnosed 18 Year Old -- HELP!

[bboop]

My 18 year old son was just diagnosed with both Crohn's and Wegener's. He's been in the hospital (Beth Israel, Boston), for two weeks now and had just about every specialty known to man working him up. A lung biopsy was the defining procedure and he definitely has Wegener's.

My husband is a doctor and is very freaked out -- freaked out beyond words. My son is a senior in high school. He's been started on a high dose of intravenous preg for 3-days in the hospital and then he'll be released from the hospital and put on 60mgs. of preg, plus Cyt (or something that starts like that -- it's a cancer drug), for 3-months. The rheum. who is working with us was very optimistic that our son will tolerate everything just fine and will be able to go back to school, but his Crohn's doctor isn't so optimistic. She said tonight "He has a long road ahead of him." Needless to say I'm very freaked out. My son goes to boarding school and at this point, there is no way we can send him back to school not knowing how he's going to react to the meds. He's determined to continue applying to college and get his apps in. He has to bank his sperm next week, before they start the cancer med., in case it makes him sterile. This is all so much -- overwhelming, really. It's like one day he was fine, the next day he had stomach problems, and the day after that he had fever and strep and a runny nose and a cough and it all went downhill from there. Only lung involvement with the Wegs so far -- no kidney involvement YET. Any advice would be much appreciated. Should he take the year off from school? Does anyone tolerate the cancer med without getting sick to their stomach? What can I do for my kid? He's moody as it is -- how bad are his moods going to get, exactly? Any and all advice is most welcome. Oh -- I asked about the new drug that I read about on here -- something that starts with an "R," and the rheumatologist said that the initial study wasn't big enough so that she'd recommend it to start. She consulted with some bigwig Weg's specialist at Boston University and said he agreed with her treatment plan. She says she has a number of Weg patients who are doing great and who have been in remission for years. Is she just painting a very sunny picture or does this happen?
Thanks everyone for your advice. I am a very worried and freaked out mother.

[Sangye]

I'm so sorry to hear about your son's diagnosis. You and your husband are right to be so concerned. Wegs is no small thing and neither are the drugs that are used to treat it.

I urge you to get to Dr Peter Merkel, director of Boston Univ Vasculitis Center ASAP. With Wegs you can't just have a regular rheumatologist or one that has treated a few Wegs patients. You really need an expert-- they see Wegs all day every day, do Wegs research, consult on hundreds of patients around the world, and understand the nuances of this very difficult disease. It can make or break you. Even if Dr Merkel is the one your doc spoke to, please go see him in person anyway. You never know what their conversation was really like, and you'll need him for regular care.

I wouldn't trust the regular rheumy's opinion about the new drug (Rituximab/ Rituxan). The Wegs specialists are very optimistic about the latest research. If a Wegs specialist says cytoxan is the best choice for him, then fine. But get it from the horse's mouth.

To put your mind at rest, kidney involvement is not inevitable. I have only lung involvement. My Wegs doc says that Weggies who've had only lung involvement for some time are highly unlikely to develop kidney problems.

Crohn's disease certainly can occur along with Wegs, but since Wegs can affect any organ it's possible that it's really Wegs and not Crohn's. The advantage of seeing a Wegs specialist at a major hospital like BU is that the other specialists (eg GI) see tons of Wegs, too. He'll have much better co-management of his care.

Cytoxan is rough but different for everyone. It's overly toxic to me without controlling the Wegs. It's failed twice. My first rheumy made cytoxan sound like a cake-walk ("You'll just feel a little fatigued on it."). HA! It was a year before I could stand long enough to brush my teeth. Other people tolerate it much better.

You can expect sizeable mood swings--from the pred, dealing with the new diagnosis and ongoing stress of the disease. I began therapy when I was diagnosed, and it's helped me tremendously. I highly recommend it for him and for you (and husband).

It's impossible to say how your son will tolerate the treatment and if he'll be able to stay in school. I can't imagine how he can go to a boarding school during the initial treatment, though. Even if he fares well with the drugs he won't be able to take care of himself. It'd be a good idea to check into online classes or alternatives for him ahead of time.

Meanwhile, take one thing at a time. Ask anything you want. This group tons of experience and can help you through it.

[onatreetop]

Sorry to hear about your son. I can't imagine one of my kids having WG. Me I am dealing with it but one of them? My oldest was tested last week for WG because of stretch markers on his back. Strange rash thing that the doc hasn't seen before. I swear that they are stretch marks. Haven't got the results yet.

When the RA found out I had WG. It was off for a whole bunch of test and magor donation at the lab. 24 tubes! Vampires! But they found what led to be the big WG. The 7 spots in my right lung was the nail. Blood work came back possitive. I have toleraded the cyt. well. My kidneys are fine aside from a few stones that were litho'd. The pred was the kicker in the begining. 60mgs , no sleeping and couldnt stop shaking. After two weeks I was lucky enough it be reduced to 40mg . That was better but still felt like a teenager that could do anything. I was lucky to have been caught early on. I am now 4 monthes in and at 15mg of pred. and 50mg cty. so far so good. I work and handle the 4 kids and hubby and mother at home. So it is very possible that after things are in control your son can still have a very full life. Dont give up hope. The shock is hard enough but you will all get through this.

[Jack]

I agree with everything said above.

Cyclophosphamide (it is called different things in different countries) was not one of the drugs that bothered me much even when I was on high IV doses so a bad reaction is not inevitable. The sperm collection is a great idea. The treatment made me sterile before having a family, but even then, I want on to adopt and everything turned out good.

Your son may well be in for a rough ride over the next few years, this disease tends to hit you with one problem after another. But most of us have reached some sort of stable condition and a New Normal. For some this is near healthy, others of us carry a few problems.

I would not think that boarding school was an option at the moment. He is going to need quite a bit of care on occasions.

[RCOSSIO]

Everyone reacts differently to their medications. I tolerated Cytoxan very well 150mg a day for about a year. I am currently on Cellcept and doing fine. I suggest you look into Rituxamib as a choice...less toxic to the body and has shown promising results. As Sangye said once you consult with your wegs specialist hear what they have too say.

As everything in like there is no guarantee that one med will work better than another and each body responds differently. But this disease is treatable (not curable) and with good care most of us can go on living a somewhat normal life. Your son should be fine

After a week in the hospital I was back in my SF agency which I had opened two weeks after my diagnosis and never missed another day.

I am surprised at how many young people are being diagnosed with WG. I was diagnosed at 40 and my uncle at 51 and we think my grandfather had it as well in 1968 at age 65. Anyway..surprise at how many young people are joining.

[Doug]

I agree with everything above, especially the sperm deposit as Cytoxan can produce sterility. I am sympathetic with your son wanting to get on with his studies- and life- yet he needs to adjust to his new circumstances.

My biggest concern, were he to continue on to college, is the stress of adjustment to that new load of work, which, as anyone who's gone through it know, is quite a bit more demanding than high school work. On top of that, I'd be concerned about him taking his medication. Denial is part of the process. For a young guy at what should be the prime of his life, adjusting to the limitations the initial stages of treatment place on him especially may be a bit of an overload. Plus, as a weggie on Prednisone, there is a sense on huge amounts of energy that are not there: I would worry about your son trying to overdo things until his Prednisone level dose is reduced to a level where the excess energy delusion fades.

I recommend this website for the Vasculitis Foundation, an organization started by a nurse who came down with Wegener's who couldn't find the support she needed when she was dealing with this disease. Freaked out is a reasonable reaction, incidentally

Front Page | Vasculitis Foundation

They have a particularly good section on frequently asked questions of new patients.

As a parent, we are glad we can help you deal with the multiple issues that come up. Hang in there. You aren't alone. It helps that your husband is a doctor, I think, in that he can ask questions of the specialists in a way they understand. Sometimes the hardest part of being a weggie is learning medical jargon so you can communicate effectively with your doctors.

Finally, I'd encourage your husband and son to spend some time reading through this forum. It will help, I think, to get them used to what it's like to be a weggie, what issues you might encounter in future, once your son's condition is stabilized and he's in remission (i.e. hasn't any symptoms- the blood work sometimes disagrees with how you feel, and there isn't a hardfast definition of what remission in WG patients is). It may be particularly helpful for your husband to go through the forum, though, because he is a father before a doctor. Freaked out is a reasonable reaction at this stage, I think, but the best way to counter that is to get on internet, find as much information as you can on the conditions your son's dealing with, come back here as often as you need to ask questions of us from our point of view as patients (there are parents as well, and I bet they'll help!). When it comes to Wegener's, knowledge definitely is power. It will help you keep your head on straight when you emotions are throwing you into a spin.

[mikecaven]

Sorry to hear about your son. There is a lot of hope for you with Wegeners treatment these days. I got it first when I was 33. It went into remission within a year. Same treatment that he is going through. No bad side effects with Cytoxan (150 mgs) for me. I was on prednisone, 25 mgs and had a few side effects. I had primarily lung and sinus issues.

I am now 62 and 1.5 years ago Wegeners came back (28 years later). It surprised me as I had been extremely healthy the last 28 years. This time I had some damage to my kidney was. I went on 60 mgs of prednisone (that's a lot) and 150 mgs daily of Cytoxan.

I was sick both times but the treatment has be back in remission again. I am now taking Methotrexate once a week (6 pills) and feeling great. Kidney damage causes me to be a little anemic...but the damage is not bad enough to do dialysis, etc.

So...just want you to hear my story. I am one of the longest in remission that my Dr. has heard from. Cleveland Clinic is the best at training doctors. I am in Dallas and my Dr. is John Cush. Let me know if I can answer any questions for you. My email is [email protected]

[Sangye]

Glad to hear from you, Mike. I'm so happy you're back in remission! I hope someday they can figure out why some people go into remission easily, some take a long time, and some never do.

I think of your 28 year remission (and not just remission but excellent health!) quite often actually. Especially when things aren't going well and I'm losing hope. I'm grateful to you for posting your story the first time and for this awesome update today.

[Doug]

Yes, it is especially important that parents of teens and young people just diagnosed with WG read this story, Mike, because they can take some hope from your experience! Feel free to break in in future!

As always, we try to encourage people to have realistic hopes, but never give up hope, be positive, follow doctors' instructions and treatments closely because good (i.e. remission, relatively unaffected lives) results are possible. Even when the results aren't wonderful, they are better than the 9 in 10 who used to die within two years in the dark ages before they knew how to bring WG into line.

Twenty-eight years of remission makes me feel better, too, for that matter! As usual, I want to offer this website as a source of general information about WG and other forms of vasculitis:

Front Page | Vasculitis Foundation

[coffeelover]

WOW MIke! What an Awesome story!
Thanks for sharing
LIsa