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Thread: 15 yr old daughter diagnosed recently

  1. #11
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    WeggieParent
    What a brave girl to have gone through so much , my thoughts are with her and your family . I wish her all the best on her return to school and been back with her friends
    DEEx

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    I think that to get sick with Wegs as an adolescent would be the toughest age of all to deal with such an ugly mess. My heart goes out to you WeggieParent and your daughter and the rest of your family and friends. You can always find support on here from us. I was 26 when I was diagnosed. It was tough in the beginning but soon learned how to manage and understand what was going on.

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    Dear Weggie Parent - Can think of nothing worse than having a child so very very ill - what an awful time you've had. It's wonderful she's making such good progress and I hope it goes on and on ! What a brave girl

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    Thank God she is doing better. I can't imagine going through this as a teenager, and quite honestly my case seems mild in comparison to many. Sounds like she's a fighter though!

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    Thank you for sharing your story with us, Weggieparent.

    On the topic of ANCAs, it's like the old medical axiom: "what you hear hoofbeats, think horses not zebras" (also known as -- the patient is more likely to have a highly uncommon manifestation of a common disease than the most common manifesation of an uncommon one").

    When docs are seeing, on average four patients an hour (maybe three for rheumys), they have limited time to make what is really a snap judgment based on their own best experience and knowledge. WG, and in fact, all of the vasculidites are SO rare that your first step, generally , is not going to order testing for them. Coupled with the fact that people don't often start at the rheumy (raise your hand if you started there -- in my case I started at an ENT for sinus headaches and later a podiatrist for foot pain) and you have what is also known in medicine as the 'blind man describing an elephant' -- a group of people describing a small part of a big animal, and not even knowing the other person is describing another part of the animal.

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    Now that you mention ANCA, I do believe the kidney doctor ordered an ANCA test when she was in ICU & that helped steer them toward Wegeners. Everything is such a blur in my mind around that time. There were dozens of doctors all throwing around terms like ANCA, PR3 tests, plasma asphersis, auto-immune disease & it was a foreign language to us.

    Thank you for your kind words. I love reading your stories and experiences.

    Now if you all can get together & find a cure for the side effects of prednisone - that would be great!

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    It's no cure, but I have found a way to greatly minimize a number of the side effects of pred. You can read this thread for info:
    http://www.wegeners-granulomatosis.c...e-effects.html

    Following this has been a life-saver for me since being back on high-dose pred.

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    Very interesting information! I'm not familiar with Ayurveda. I'm going to discuss this with my daughter today after school. She doesn't have control of very many things in her life anymore so on matters of diet/exercise it is up to her. She works with a physical therapist once a week on stamina and endurance to help her be strong for a full day of school every day. Jumping rope & jogging. That is helping her lose the extra pounds she gained while she was in the hospital. I think she'll be thrilled to try anything that will lessen the moonface.

    Thanks again!!

  9. #19
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    O MY...I had a hard time reading your post...My heart goes out to you and and spirited daughter...WG is no fun and I can not imagine going thru this at 15 yrs old...I am having a hard time dealing with it in my 40's...There are alot of seasoned WG here that can guide you and give you all kinds of great info. I am a new be and still learning......Just please make sure someone listens to your daughter when it comes to her aches and pains or feeling different...and help your daughter be her own best advocate...we all get tired of being sick and tired and at times fake well to be able to feel normal for once ....From all I have learned here it is the most importnat thing ...Listen to your body.....I will keep your family in our prayers and give your miracle daughter a big hug from all of us......you are one amazing mom
    Want to see a miracle? Plant a word of love heartdeep in a person's life. Nuture it with a smile and a prayer and watch what happens...Never underestimate the power of the seed!

    My mojo for today.....gonna be johnny apple seed and just keep planting
    Lisa Marie
    The happiness of people is not necessarily to have the best of everything...but make the most of what you have!!

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    Quote Originally Posted by pberggren1 View Post
    I think that to get sick with Wegs as an adolescent would be the toughest age of all to deal with such an ugly mess. My heart goes out to you WeggieParent and your daughter and the rest of your family and friends. You can always find support on here from us. I was 26 when I was diagnosed. It was tough in the beginning but soon learned how to manage and understand what was going on.
    I know it was hard on my family watching me during my intiial treatment when they didn't think I would survive. I can't imagine how difficult it would be to watch a teenage daughter go through such a difficult experience for such a long time. The one fringe benefit is that most problems in the future will seem like small bumps.

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