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Thread: 12 Year Old Diagnosed and help wanted

  1. #11
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    Her dosage probably also has something to do with her age and weight and all that too... They told me that in the beginning they usually want to hit it hard and then bring it down from there... But, I guess "hitting it hard" is different for everyone!

    Once I finally got some REAL medical attention, they diagnosed me pretty quickly, too... It took them less than a week... Which was really impressive, I thought... So, I asked over and over HOW sure they were... 98% sure works for me, I guess...

    Thank you for all your kind words. They mean a lot!

    Between you, me and this board, I don't feel very brave at all...

    Thank you again! I hope your daughter feels better soon! I hope she's liking high school!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  2. #12
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    SoleSinger:
    I forgot to thank you for the advice for Nioxin shampoo. So, thank you. We did find it at our local Wal Mart. We are using L'Oreal Extra Gentle Kids 2 in 1 shampoo and conditioner. we have noticed that my daughter's hair isn't coming out in such great clumps. Hooray!! I have also found that if I don't comb her hair with a large combed pick until after it has been dried on cool setting with the blow dryer, that less hair falls out.
    Thanks again.
    Everything good is possible !! :angel:

  3. #13
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    No problem! If there's anything else I can help with just let me know!!

    Wow! I didn't know Wal Mart sold Nioxin! I thought it was only at salons! Cool!

    Glad that her hair is sticking around a little better!

    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

  4. #14
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    mommymc:
    My heart is with you as I read your story about your daughter as I too am a mother of a 15 year old victim (she was diagnosed at 13.) I also lived around the Lupus disease all my life as my mother is too a victim and has been for 30+ years.
    It is very difficult to deal with the changes that Lupus has in store for our girls lives. But you have to keep telling yourself and her that you're willing to fight it. That's the only thing that keep us going. My daughter started off at 80 mg of pred in January of 2004, by Nov of 2004 she was decreased to 0!! We thought that was great...but it wasn't...she started losing weight very fast and became ill within a couple months. By the time April 2005 came around she had lost 30 lbs and need to be hospitalized. To make a long story short she is now on cytoxan (for six months) plaquenil, pred, vasotec, and others just to keep her going. Her pred now is at 20mg and I'm in no rush to get it lowered, I do believe that rapidly lowering her was what got her sick in the first place. They are so young and the swelling that comes with the meds definitely makes in impact on them, but I can tell you that all though it is hard in the beginning, she will adjust.
    I understand when you say you want your daughter back, I felt the same way. The become very depressed, angry, and lose some of their self-esteem with this.....but I've grown to realize that this is my new daughter, the one the Lord decided to give me and the one I will take care of and love.
    I will pray for you and your family for quick healing and hope that you can soon find some peace for your little girl.

    Much love and blessings,
    Myrna
    Myrna Figueroa

  5. #15
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    Myrna:

    Thank you so very much for sharing your very touching, personal story with me. You are very strong to have such a possitive outlook on your life. I admire you !!

    It is very comforting to have a 'mom' know how hopeless I feel sometimes. Everyone has been so great on this board !! But being a mom, who always makes the 'boo boo's' better, who can't fix this one, leaves me with a feeling of dispair at times.

    I am starting to know my daughter as she is now. She is still my child and I will always love her and do my best by her.
    I hope to talk with you again. Thanks for listening, and replying.
    Claire McDonald

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