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Thread: Mom of Newly Diagnosed 18 Year Old -- HELP!

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    Default Mom of Newly Diagnosed 18 Year Old -- HELP!

    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.

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    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.
    Last edited by Sangye; 10-31-2009 at 02:56 PM.

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    Red face

    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.

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    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.

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    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.

  6. #6
    Doug Guest

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    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.
    Last edited by Doug; 11-01-2009 at 01:54 PM.

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    Default Thank you, thank you, thank you...

    Thank you to everyone who has replied to my thread. My husband and daughter (senior in college), are at the hospital with my son. I slept very fitfully last night and woke up feeling exhausted. I had a hair appointment that I was determined to keep (strange how vanity comes up at a time like this), and was going to go to the hospital from there. My emotions were going up and down, but mostly down at the hairdressers and I kept on nodding off -- when I woke up felt like I wanted to scream. Realized I needed to come home and take a tranquilizer (Klonopin), and get some sleep. I was stopped yesterday by a policeman who told me I failed to stop my car for someone in a crosswalk -- I always stop for people in crosswalks. I didn't even remember seeing anyone in the crosswalk. I gave the policeman my license and registration and then, I started crying and I told him that I've had a kid in the hospital for 2-weeks and that I'm just exhausted and that I honestly had no memory of seeing anyone in the crosswalk. He got really nice and told me he had a kid at Children's Hospital once and understood. He let me go. I drove right over to Starbucks and got myself a large coffee.

    I feel unbelievably anxious and scared -- teary, angry, furious, like I want to scream at the world. My son has serious learning disabilities, which is why he goes to the boarding school he does -- it's one of the best in the world for this kind of thing, they have a waiting list a mile long, and it's been the perfect place for him. I don't know what to do. I can't just pop him into our local public school and expect he'll do fine, because that won't happen. He loves his school so much and this is his senior year and well, you know what I'm saying. I guess I'm just feeling very sorry for my son and for my husband and me right now.

    My husband went to medical school with someone who works in the Rheumy department at Boston University Hospital. He'll call his friend and see if we can get an appointment with Dr. Merkel sooner, rather than later. I just want my son, who has worked so hard to overcome so much in his life already, to be okay. I hear you all when you say it's going to be a rough few months (or more), but my son will eventually be okay or "the new," okay. And I can accept that. It breaks my heart, but I can accept it. I'm not worried that my son won't take his medicine. He's very rule driven and if he's supposed to take his medicine, he'll take it. He's good about stuff like that.

    Should I plan on having a tutor come in to educate my son through the rest of his senior year and bag the boarding school? Or, should we try sending him back to school and see how it goes? I honestly don't know what to do. I would send him back on a reduced course load. As far as college goes, it seems very clear to me that my son is going to need to go to a local college that' s not all that rigorous or demanding. Somewhere where the work and the content are light, as it were. This is just so sad. This is a kid who has worked so hard and is so determined to succeed and has overcome so much in his life. And now this. I guess I'm feeling sorry for myself here. I guess I'm allowed.

    bonnie

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    You ABSOLUTELY are allowed to feel sorry for yourself and your son. The anger, frustration, fear--all completely normal. If you didn't feel like that, you'd be in denial. Even under the best circumstances Wegs is difficult and will always be part of his life. You can expect some serious grieving to occur for all of you. It happens over time.

    Given that, you've got to find a way to hold yourself together, steel yourself. Wegs is a marathon, not a sprint, and you'll need your energy to last. So scream and cry, and then gather yourself up and get back in the ring. You'll have to teach your son to do the same. Very important for long-term success. Help him apply what he's learned overcoming other obstacles. He's fortunate to arrive at Wegs with those tools-- they were hard won.

    The concerns about school are multiple. For one thing, he'll have quite compromised immunity for a prolonged time. His exposure is too high in a boarding school, IMO. It's hard enough for kids who live at home and go to school. The treatment is also pretty heavy duty and there's no telling how he'll be affected. He may have frequent doctor visits-- pretty typical. Stress is a very, very bad thing for Wegs. Being on his own, taking steroids, compromised immunity, likely feeling poorly, etc.... It just doesn't sound good.

    I suggest you call the school and see what the options are. Surely they've had kids with illnesses or injuries that keep them out of school for extended time. You may have to sit down with his teachers and the administrators to see what you can come up with.

    Regarding college plans, don't go too far into the future right now unless you have to (ie, college applications). He may respond better than you can imagine or he may have difficulty.

    You may be surprised about his willingness to take the meds on schedule. I'm the kind of patient who never misses a pill, and when I agree to a treatment I follow it without fail. And yet... the drug side effects can be so awful sometimes, or you just get so sick of dealing with it all that I confess to having had small rebellions at times. Not enough to trigger a flare, but enough to surprise me. It's human nature. Not swallowing the stupid pill feels like taking back control of my life, in some weird way. It's flawed and twisted logic, but there you go. (I had uncountable blood clots in legs and lungs the first week and had to do twice daily very painful blood thinner injections for 2.5 years. Every so often I just "skipped" a shot. I knew it wouldn't kill me, I recognized how dumb it was, but I felt a little better nonetheless )

    Prednisone also makes you very forgetful--hard to think clearly on it. So he might need help remembering to take things on schedule. At the risk of lengthening this reply even more, I'll leave you with a funny story about that. When I first got out of the hospital, I was on high dose pred and was extremely weak. I could barely think straight. My mom stayed with me a couple weeks, but she wasn't used to being at high altitude (I lived in the mountains) and the low oxygen made her exhausted and mentally out of it. One morning at breakfast I couldn't remember if I took my pred only moments before. She couldn't remember either. We emptied the bottle of tiny pills--hundreds-- and started counting. We kept losing count! It took many tries, putting them in piles of 10, etc... to get through it. It was hysterical.

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    Red face

    Yes you are allowed! I still have waves of different emotions suddenly. I would wait to see the spec. doc and see how he is responding to treatment before you plan on changing all of your lives. It could be a short stay in the hosp. no one knows again it all depends on how he responds. We are hoping for you and are here,
    How did the hair turnout? I am due again too.

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    Sorry to hear the full story behind your son's schooling.

    The problem is that during the early days of treatment (in my own case, it was the first few years) he will be at quite a high risk of having a flare up. This MUST be caught and treatment adjusted as soon as possible because permanent damage may well be occuring during this time. Simply feeling a bit unwell could be something as serious as renal failure so he needs to be watched over by someone who understands his condition.

    Sorry to sound dramatic, but this is a life threatening condition that has a very good prognosis if treated correctly and promptly.

    Have to agree with Sangye over the pill taking. After well over 20 years of it, I sometimes look at the handfull I have to take and weed out the "non essential" ones. Not a practice you can sustain I know, but it demonstartes the strain of long term medication.
    Last edited by Jack; 11-01-2009 at 07:48 AM.

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