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Thread: 20 year old son

  1. #31
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    Quote Originally Posted by Aneinu View Post
    they will be discharging him today. They will raise the presidone to 80 per day. Want him back for labs on Monday.
    Get blood work at least once a week until his condition is well stabilized. I still do once a month after almost four years.

  2. #32
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    I am glad you found this place of knowledge for your sons sake. I am wishing your son the very best of care and healing. Please keep us informed about how you all are doing.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  3. #33
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    High dose of pred. Will cause side effects such as moon face, round neck, appetite and might cause him to be edgy at times. I did me , anyway.

  4. #34
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    Hi Aneinu! Welcome, and I am so sorry for all that he and his loved ones have been going thru. Luckily you are in a great area, and I am so happy to hear that you are comfortable with his care.
    There are other guys I have heard of his age with WG - one is studying to be a pilot even. I know many other parents (like myself) of a Weggie kid, and I would just add a word of advice that the disease in pediatrics seems to strike suddenly (including in flares) in very significant ways. I believe monitoring young people is more urgent, in fact.
    All the best to him, and you.

  5. #35
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    Welcome, Aneinu. As you have already discovered, this is the right place to get support, friendship, and information from people who have been there and continue to connect every day with those who are newer to the disease. This is the place to feel so much less alone, and it would be nice to meet your son here, too. But I understand if he'd rather not. He needs to concentrate on getting well, and is on the right track, living in Cleveland, where there are excellent doctors. And the Cleveland Clinic is right there should you ever need help from a doc there in addition to the one you are seeing, whom you feel comfortable with. I'm a firm believer that there are lots of good docs who can treat this disease who aren't on the lists of experts that we are familiar with. Everyone above is right, your son has a good chance of getting a lot better with treatment and resuming whatever he was doing before this hit. Keep us posted, ask any questions, make use of the search function, etc.
    Best wishes to both of you.
    Anne, dx'ed April 2011

  6. #36
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    Quote Originally Posted by Birdie View Post
    Cytoxin (Cyclophosphamide) is not unusual as a treatment for Wegs. It's what I took immediately after diagnosis and for the first year and a half (150 mg).

    Mostly, relax... you gotta stay calm and informed, which it sounds like you're doing by knowing test results. Don't expect instant improvement or be discouraged on a daily basis, especially when the test results show dramatic improvement. Consider pushing the hospital to do ALL the tests they can do. Make them use every piece of diagnostic equipment they own. That's a good thing since it becomes more difficult once he's discharged.
    It's important to note that no pediatric Weggie I know of took Cytoxan any way except infusion. In fact, I only fairly recently understood what you guys were talking about with your "months" lol - I thought you meant like our daughter had 3 months of Cytoxan (one infusion a month for three months.) And one major reason they try to avoid Cytoxan with pediatrics is that its side effects are much more serious than Rtx, and the worry about sterility in particular is an extremely difficult one for most families.

  7. #37
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    I replied before reading all the posts. When I first got treated in 2011, RTX had just gotten approved and was just beginning to be used more commonly. I had bad insurance, RTX is very expensive, and my doc thought CTX made the most sense for me. It worked fast, but I was on it for close to a year, I guess because once I made a lot of improvement, it sort of leveled off and I still wasn't in anything like remission. I think I could have taken off it a little sooner. I was eventually switched to MTX, which is working well to keep me on an even keel, along with prednisone, of course. I tolerated the side effects of CTX OK, and drank lots of water. I think all the drugs have side effects that must be kept in mind, and people vary in how well they react to a given drug. If the doc decides to try some CTX for a short time to give a little boost, I wouldn't think it a big deal, even if it was along with RTX, which I have heard of being done. But it might not be necessary. Good luck. And if you are in doubt about your docs' take on this or need a second opinion, I'd certainly advise seeing someone at the Cleveland Clinic, like either of the two Pete suggested.
    Anne, dx'ed April 2011

  8. #38
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    Thank you everyone again for your input. My son came home before the weekend. He is tired throughout the day, but getting stronger it seems. He took blood work the other day and all the markers thank God were positive except the creatinine level which was over two. Doctors not so concerned, but they did say that he should drink tons. We are scheduled for second dose of rtx this Monday. Thanks again for this wonderful group.

    Sent from my SM-G920V using Tapatalk

  9. #39
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    I'm so glad your son is home and doing better! Obviously, the treatments are working. Keep us updated on his journey, and whether his creatinine number will improve. Happy Holidays!
    Anne, dx'ed April 2011

  10. #40
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    Quote Originally Posted by Aneinu View Post
    My son came home before the weekend. He is tired throughout the day, but getting stronger it seems.
    You can expect him to feel much better very quickly. Wegs goes into hiding pretty fast once it's treated. Make certain he gets plenty of vitamin Klondike.

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