Mom of Newly Diagnosed 18 Year Old -- HELP!

[jola57]

Hi Bonnie, you do whatever it takes to get your frustration, uncertainty and anger out of your system. I have lived with this disease for 3 years and have been on cyclo 2 times, this last one on for 12 months, 60mg pred, and now am on methotrexate and 12mg pred. I have tolerated all quite well with just some tiredness. I have had no mood swings or stomach problems. What was diagnoses as Crohn's may just be WG. It is a running joke that I am like a robber looking for a quick escape, that is I look for a quick escape to a bathroom.
I was an immunologist and my husband is an anesthesiologist. While I took the news of my illness well my husband didn't. I know that I have to deal with it after all its my life but for my husband it was devastating, he felt so impotent, with all his training there was nothing that he could do. For your husband it must be even more so because it is your son. I realy think it would be good for him to read some of our stories and follow our forum. He doesn't need to participate but just see that having this disease is not the end.
For your son, I can't tell you how he will react to the meds, we are all so individual, but for most of us, with some exceptions, we are living regular lives, some of our youngest, finish schools and continue. I do not know your situation in the boarding school, here in Vancouver we have had a number of problems with H1N1 virus. With your son starting chemo and steroid he will be totaly immuno compromised, having him bordering is not a good idea. Ask if the school would consider home schooling for a few months until he gets a good to go from his doctor. It is worth a try and your son might graduate with the rest of his chums.

[coffeelover]

hello Bonnie,

My youngest just started college this year and I know how important that senior year in high school is. I think you should ask your son what he wants to do. Stressing all the information you have received thus far and the possible set backs he can have on immuno supressants. I would strongly encourage hand washing, masks etc to avoid any further illnesses, but I feel so bad for him to not be able to enjoy this most enjoyable part of high school. Ask the school to work with you in regards to having to miss school for appointments and general not feeling well days. Depending on the mind set of your son, but if it were me, the more "normal" my schedule was the better I would feel in general.
I do not want to dispute what these othere ver intelligent people have recommended. Believe me! They all know what they are talking about.
Lisa Coffeelover

[bboop]

Thank you guys. You can't imagine how helpful you're being.

My son is going to be released from the hospital tomorrow. He'll receive tutoring in the mornings, provided by our school district, and we'll go to doctor appointments in the afternoon. My husband, thank goodness, is feeling quite a bit more optimistic than he was. He called a good friend of his who is a rheumy here in Boston and his friend confirmed that the Rheumy we're going to use is a great choice. Also, he said that he sees Wegener's patients and it's all not doom and gloom at all. He feels that because of my son's young age and because he doesn't have the blood marker (A ??? -- there's so much I have to learn), his prognosis is very good. I hope he's not putting a Pollyanna voice to it -- but my husband feels encouraged. On the other hand, I started going downhill yesterday. I suffer from Clinical Depression and while I've been stable for a long, long time now, I have to be vigilant. I have a call in to my psychopharmacologist (the world of mental health is one I do know about!), because I cannot possibly go down that dark black hole at this point in time.

Regarding school and college apps -- my son absolutely wants to get back to his boarding school as soon as he can. He loves it there. He has learning disabilities and his school is one of the only ones in the country that can meet his educational needs. He's very focused on going to college next year, but is willing to change his plans in terms of going far from home, to applying to places he didn't like as much, close to home. I feel terribly about this, but it's the "new," real. Right now, everything feels overwhelming, but step by step, we'll cope. My community of friends has come out in force -- they're getting ready to deliver meals, they'll do food shopping for me, etc. How lucky that I know such wonderful, giving people.

And to you -- my new community of friends -- thank you. Please keep "the cards and letters coming."

bonnie

[Sangye]

I'm so glad he's getting out the hospital. That makes such a difference.

I'm a little confused about the new rheumy-- are you still going to see Dr Merkel?

The blood marker you're referring to is the ANCA test. It's used to diagnose Wegs but has little use in measuring response to treatment as they had originally hoped. I've never heard that having a (-) ANCA indicates a better prognosis. I think that is outdated thinking. They used to consider Wegs to be in remission if the ANCA went negative. But many people have active disease with a (-) ANCA, and many people are clearly in remission but still have a high ANCA. Most of the Wegs specialist have little regard for the ANCA test once diagnosis is made. Mine doesn't even order it on me.

My original rheumy almost killed me over the ANCA. He kept me on cytoxan when it was killing me, just to get the ANCA lower. Mine just kept rising.... Even my doc at Mayo Arizona (not a Wegs specialist, but treated Wegs often) wanted me on high dose steroids just because of the ANCA. The Wegs specialists rely on patient signs/symptoms, diagnostic tests and lab work indicators (inflammatory markers, kidney function, etc...) to determine prognosis and disease activity.

This doesn't mean your son's prognosis isn't good, just that only a Wegs specialist can say for sure.

I'm glad to hear you're taking care of your depression. No dark holes for you. Your son needs you up at ground level.

[bboop]

My husband's colleague said that staying with the rheumy fellow at Beth Israel seems like a really good choice. She consults with Dr. Merkel and is supervised by 2 Weggie specialists -- one at BI and the other at the Brigham. My husband's colleague says that he sees some Weggie patients and that he's noticed that those who don't have the ANCA marker to begin with seem to have a better result from the meds and can stay in remission for a long time. I don't know if this is true or not, but it's what he said. My son will start the Cytox soon -- he's been on IV pred in the hospital for 3 nights now and it's brought down his inflammation significantly. He's being sent home on pred pill form and then, after he banks his sperm, will start the Cytox, I'm sure. The rheum wants to see him the day after he's released from the hospital and he needs to get tests done every other week at the lab. It all seem so overwhelming, especially because my son doesn't drive, we're an hour from Boston, and so, everything is all up to me. I have a great community who are already organizing to bring meals and do food shopping, but I know that won't last forever. I honestly don't know what will happen with school and college apps -- we'll do the college apps, but if college has to be postponed for a year, so be it. Right now, the most important thing is health. Everyone's health.

bonnie

[Sangye]

I hope it works out well for you at BI.

Ask your friends for help with driving. I lived alone and had to do everything by myself. So I really relied on friends to step in. I had a wonderful support network of friends. You can't carry it alone. Also see about getting the labwork done close to home.

I'm wondering if it's possible to be accepted to a college and delay entrance if he's not in shape by then. A college advisor would know.

[bboop]

You sound pessimistic about Beth Israel. Why? My husband's friend, the rheumy, said that Dr. Merkel at BU travels a lot and is very busy and we'd probably get a lot more time with the fellow at BI. He said that since she consults with 3 specialists, we're getting the best of all worlds and she does have WG patients, herself. I'm not a doctor nor do I play one on TV nor do I know anything about Wegener's. Hence, if you've had experience with Merkel and think he's the one, let me know. I'm not talking about our seeing some small town Rheumy here -- we're going to Beth Israel, which is a Harvard teaching hospital and the place that did the diagnosis. But, I want to do what's best for my son -- although my husband will have the last word because he's a doc and feels that he knows what's best in the long run (grrrrrr).

Yes, college apps can be submitted and then, if my son is accepted, we can defer for a semester or a year. My son is hell bent on going to college in Sept, but I'm realistic and I know that remains to be seen. We'll really just have to wait and see -- what else can we do.

Is what my husband's rheumy friend said about the ANCA true -- that those with no ANCA marker tend to do better and respond to medicine better? Or is it not true at all? I want to know the truth and if we're getting old information, then I want to know that too. It may be that I have to do the cutting edge research on my own, as my husband simply trusts the docs at BI -- my husband used to be a doc at BI and he considers it his "home."

bonnie

[Sangye]

BI is an excellent hospital. I'm only speaking about Wegs, and while they may have some increasing expertise they're not a specialty center for it. People with Wegs go to BU from all over the world. (I don't know what BI specializes in, but I'm sure there are people going there from all over the world, too. Just not for Wegs! )

Wegs is very unpredictable and difficult to treat. I liken it to a wildfire. Regular firefighters are helpful to put out wildfires, but they call in "Hotshot" teams who really know wildfire.

Like having a surgery-- you get the surgeon who's done the procedure a zillion times and has seen all the weirdo cases. No surprises. I'm sure your husband would agree with that.

When I was hospitalized a few months ago in Johns Hopkins, even the other JHU rheumys who are quite famous in their specialties were totally unable to diagnose/treat this current flare properly. Some said it wasn't a flare, some said it was and wanted to use much higher doses, etc...

My visits at JHU are no more rushed than any other doctors have been. The guy doesn't miss anything, and he knows me and my case inside-out. Even if they were rushed, I'll trade accuracy and expertise over time any day.

If it were me, I'd go to Dr Merkel and see what he says. There's no harm and there may be huge benefit. Even if he says the same, you won't have any nagging thoughts that make you think "What if?"

[bboop]

Sangye,
I agree with you 100%. I wish there were a way I could forward your posts to my husband's email -- he will tell me he doesn't have the time/doesn't want to read a lot of anecdotal information. If I could just forward your post to him, it might make a difference. Maybe I should do a cut & paste....

I know that after speaking to his rheumy friend, my husband came out of the very deep sadness he was in and perked up enormously. Both my husband's rheumy friend and the rheumy fellow at BI were very upbeat regarding our son's prognosis. They felt he could be put into remission after 6 mos. of pred and cytox, but I had already read this board and I know better -- it's not so easy or simple. So, I'm the one who is now deeply sad and I would like our son to see Dr. Merkel or one of his associates -- I suppose I could make an appointment at BU for a 2nd opinion and my husband would be fine with that. In the meantime, our son gets released tomorrow from the hospital and he sees the rheumy at BI on Wednesday.

You are an angel sent from heaven -- thank you so much for what you do here. I am the listserv moderator for a group of 400 families who have kids with learning disabilities and I spend an enormous amount of time with those parents who have kids who are newly diagnosed, etc. Maybe this is both of our ways of "paying it forward," as it were.

Out of curiosity, how old were you when you were diagnosed? Are you able to work and if so, full-time?

bonnie

[Doug]

Bonnie- There are so many contingencies involved in your son's care. It's good to hear your husband's feeling better about things. No matter what we suggest on this forum, you are the family that has to work out the best care for your son, based on the best information you have, and the realities you each, in the family, have to deal with personally or professionally. In my opinion, you are handling this much better than you may feel you are. That is natural, as a person, as a parent for sure, as an outsider looking in on someone else's serious health issues and trying to assure the best outcome. Don't even think about next September until you get through each day of this November. As quirky as this disease is, your son may be ready to go to the school of his choice next September. Deal with that issue when you know how he's doing at the time you start sending out applications to schools. Step by step. Day by day.

Have you ever made a timeline as a tool to help you work through a process? Perhaps that would help you. They aren't rigid things that never change, but guidelines that help you keep focused of a future goal. They can have different stuctures, but, on the simplest, least time-consuming level, a simple chronological list, in columns, in your computer works. (Make it in Excel, for example, or a spreadsheet you find easy to use.)

The first column is the event that needs to occur to reach the goal (last item in your list), in chronological order. The second column can be a date the item needs to be done, if you have a date, or an anticipated completion date. The third column can be things that come up that set the completion date forward to a later date than expected. The fourth column can be "To Do" items that will help complete the item or advance completion in some way. Using this format, it's easy to insert new items in your process as you become aware of them.

Other suggestions (asking friends to help drive your son to appointments, for example) may be part of the process that helps you get through this. That your support group is kicking in with meals and TLC is heart-warming and reassuring, too. My neighbors, my work friends, my boss, my church family all stepped in for me in many loving, thoughtful ways. In each and every kindness, my family and I knew we were blessed. Don't forget to count your blessings each day, Bonnie. Write them down in a little spiral notebook as they occur to you so you can look back at them from time to time when you need a boost and a wholesome cry! Find some sunshine in the gloom. A positive attitude will help your son as much as anything. It'll help you. Sounds trite, but I bet even your husband can vouch for the power of positive thought in a patient's healing. times 100. I think you need a bigger boost than most people at this point!

Would it make you laugh if I told you that I took my two cats to have shots and an examination today at the vet's, and learned that the orange tiger-striped one I called Lucy actually is a neutered male? Or that this isn't the first time this has happened that I mistook a neutered male cat for a female? Or that I'm 61 year old and should have the difference figured out by now? Ha!