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Thread: 15 yr old daughter diagnosed recently

  1. #41
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    Hi Sue, welcome to the group and sorry you had to find us. I'm glad you got to the VF conference so early after diagnosis. I can sure understand where he's coming from in terms of the "old head on new body" feeling. Therapy is a very good idea. I'd be lost without it. All the stuff you come into Wegs carrying gets magnified by the stress of a chronic disease. Your son has already been through so much and his journey with Wegs is just beginning.

    I shuddered reading that they had him on Naprosen. It's so damaging to the GI tract.

    What dose of pred is he on at this point?

  2. #42
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    Hi, Sue, and welcome to the group. I'm pretty sure that we met at the forum and I encouraged you to come here. Feel free to PM me if you don't know who I am!

    Anyway, I know that there are people here who have teens with these disease, as well as yahoo boards for parents. I'm sure that others will be along to tell you about this. I'm glad he's getting better with PT.

  3. #43
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    Hi Sue.

    My daughter also became depressed right before school started last month. Her beautiful long blonde hair has become so thin you can see her scalp, her face is almost unrecognizable because of swelling from prednisone and she doesn't have the stamina to do what her friends do. She said she feels like she's living in someone else's body and she hates that body. Our Children's Hospital recommended a physical therapist at the hospital that specializes in sports recovery and that has made the difference in her attitude. She treats her like an athlete getting into condition and my daughter loves that. She doesn't feel like it's hopeless anymore. Our nephrologist contacted one of his WG patients living in our city that was diagnosed at 15 and is now in college and asked if he would be interested in talking to my daughter about his experience. He gave us his name, we contacted him and my daughter has gotten lots of encouragment knowing he was in the same place she is and now he is successful in college and living a happy life. He will text her occasionally with inspirational messages to give her hope.

    I hope your son's physical therapist will give your son peace of mind that he can get strong again. I desperately hold on to those stories where someone with WG has gotten better.

    You were very smart to attend the VF conference. I wasn't aware things like that even existed. You seem to be on top of things and taking charge! Go mom!!

  4. #44
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    Thanks to all of you for your words of encouragement that my son and the rest of us will get through dealing with the ups and downs of Wegener's. Today, well technically yesterday, 10-10-10, was my son's 16th birthday. He spent most of the day at a 6 Flags park riding on roller coasters with a pass that bypassed all the lines. He and his older siblings came home very happy and tired. A lot has happened since I posted his story. He has started therapy with an intern at his school. In addition I am working with our mental health insurance plan to find someone who does therapy with adolescents who have chronic illness. Most of his back pain is gone as he is working with the new physical therapist. We had a second opinion appt. with an adult rheumatologist who is a vasculitis expert and involved with the Vasculitis Foundation. She met with his pediatric doctors and they decided that he needed a kidney biopsy to determine if he was in remission since he had been on cytoxan for 3 months. He is in remission and has now switched to azathiaprine. So far no side effects. He is currently on 30mg of prednisone as well. The adult rheumatologist has agreed to accept him as her patient. This is a great relief as the pedi rheum was not following him well or very involved in his care. He also talks really well to the new doctor and she talks to him (not me). I feel so much relief to have a doctor who is a vasculitis expert supervising his care. His creatinine level, 1.5, was the best it's been since May as well so they think that while there is severe kidney damage the healthy parts might be starting to function at higher level to compensate.

    @Jan: Yes, it was you who steered me to this forum and I can't thank you enough! We had dinner together at the Vasculitis Conference. You are such an inspiration to me! All of you are just getting through each day with this disease, let alone working and raising children, everyone deserves a medal, .

  5. #45
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    That all sounds like great news sue.
    Your son is so lucky to have you working to give him the best chance possible and his current treatment seems to be right on track. I'm sure he is going to do fine.
    Jack

  6. #46
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    Sue, that is wonderful that your son is heading in the right direction. He will evenually do all the things that a normal 16 year old boy does. When I was 15 my creatinine was 2.0 and they told me that I would eventually need a kidney transplant....when I turned 24 my creatinine was a 7.5, thankfully my brother gave me a kidney.
    Even though my creatinine was 2.0, I still did the normal teenager stuff, I was a very head strong and stubborn person and still to this day, I am a fighter! Back then they kept me on a low dose of prednisone and high blood pressure medicine. Your a great mom!

  7. #47
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    Yay, Sue that's all such wonderful news! I'm very happy to hear he's got a Wegs doc taking care of him. I wish all the kids with Wegs could have that. Keep us posted.

  8. #48
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    Hi, Sue -- I thought that was you! I'm so glad you are hear with us, and glad to hear it is going so well for you boy.

  9. #49
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    Hello Sue and welcome. I am glad things are looking better for you son. It seems he has a good team working with him.
    Jolanta

  10. #50
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    Sue, that is very encouraging to hear your son is improving and - wow - feeling well enough to ride roller coasters!! Love to hear that!! Sounds like you've got a fun-loving adventurous 16 yr old!

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