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Thread: My 16 year old daughter just diagnosed

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    Default My 16 year old daughter just diagnosed

    Hi,
    My healthy, athletic, energetic 16 year old daughter was just diagnosed with Wegener's right before New Year's. She hadn't been feeling well all fall. I kept taking her to the pediatrician, and finally after a trip to the ER and many, many tests, she came up positive for Lyme Disease. She took the meds, and still wasn't feeling well. Finally, we took her into Boston where more tests showed "vascular inflamation". I actually had to pull her from her track meet and get her admitted to the hospital. We spent 5 days in the hospital getting a blood transfusion, 3 days of steroids, rituxamab, any cytoxin. What a whirlwind. She is back to school, running, dancing, and still getting daily steroids, and weekly infusions. I can only hope this was caught early and she will have total remission. I can't believe how things turn so quickly.

    This forum has been so helpful to me. It is comforting knowing there are others going through the same thing. Thank you. Ann

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    Hi Ann and welcome.

    I'm so glad you have been reading the posts and getting some helpful information about WG.
    I'm really sorry that your daughter got this diagnosis but I'm glad that she got help quickly and is now back at school again.

    With all of your reading on here, you will know that your daughters immune system is now very low.
    She will need to take care when she is at school in regards to germs etc. and also when they do immunizations - no live vaccines.

    Good luck to your daughter for continuing health and keep us updated with her progress.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome Ann, there are others on here in your same place and your daughter's. She/you are not alone. Please ask any and all questions as she progresses with the WG. Hate seeing young peeps with this, but they stand a better chance in so many respects than us oldies...hang tough. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hi Anni, and welcome.
    I am sorry for you and for your daughter. at least they found up relatively quick what it is.
    your daughter sounds like s strong girl, and I believe that she can recover soon and have good and normal life of teenager. there are here more parents of teen. check around and find them.
    good luck and continue to write.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Welcome, Ann, and I'm sorry you have a reason to have found us. I cannot imagine getting dx'ed with Wegener's at such a young age, in the prime of health and vitality. But it sounds like she is doing very well indeed if she is already back at school and running and dancing. I hope her progress continues and she goes into remission soon. It sounds like she stands a good chance of that. Keep us posted, we are interested and we care!
    Anne, dx'ed April 2011

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    Thanks everyone. This week we go overnight for Cytoxin. I am a little nervous about it. She did have a dose when she was hospitalized and did pretty well. Just afraid of infections, etc. She has a great attitude. She said to me yesterday, "Mom, it isn't so bad".

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    Ann, I take it the weekly infusions are Cytoxan(ctx)? Do you know the dose?
    Phil Berggren, dx 2003

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    I don't know. I will let you know Wednesday when she gets it.

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    Hi Anne, I was diagnosed at 25, I am 48 now. I was treated immediately with predinosne, cytoxan and I think atiobiotics of some sort. But the cytoxan was given in pill form. I went into remission within a month, and was like your daughter....I was riding "stand up" jet skis, working full time, I felt like I was walking in "fast foward" because of the prednisoone!! I was on 80mg for a short time, then they began slowly taking me down. It was just fantastic to feel so WELL!! I am SO glad your daughter is back at school and getting back in the "swing of things". I noticed that after I was released from the hospital, the vasculitis caused temporary pain in the tips of my fingers, so when I buttoned my shirt or typed or wrote with a pen or pencil it was painful. Another thing I want to add. Have you talked to her doctor about the dosage of the cytoxan she is taking?And have they talked to you about how it effects her overies? The Cytoxan had a devestating effect on my ovaries, and your daughter being so young, I would hate that to happen to her. Her wellness and health is so much more important than being able to have children in the future, but it may be someting to ask her DR. They have come a long way since I was first treated, so JUST MAYBE they take that into consideration, because I was not given Rituxan when I was diagnosed, and so I assume I was on a higher dose of Cytoxan. I am so glad you are here, on the site. I have already learned so much, and the support is incredible! My mother has already talked to you about finding a place in Boston that could treat your Daughter. Thats how I learned about you. If you have any questions for me, please, no subject is off limits, Im an open book, so please feel free to ask me. Best of luck! Hugs and Prayers your way, and for your daughter.
    Life is a Gift~ Lilly

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    Hi Lilly,

    Thanks for that! I am so happy to hear you have a full life and remain active. Yes, the doctors are all over the cytoxin and ovarian failure. There are a team of doctors and the disagreed on the cytoxin but ultimately decided that she should have 2 doses only. The second one is this week. She has also had Rituximab two times, as well as weekly IV steriods and daily steroids.

    I am new to posting and am not sure if I got the message from your mom about treatment in Boston. I am very interested in that info. I am comfortable where we are (Tufts Floating hospital) but am considering getting another opinion at Mass General.

    Lilly, what were your initial symptoms? Have you had a recurrence at all? Thanks for any info. I love to hear that you are doing so well. Ann

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