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Thread: 15 yr old daughter diagnosed recently

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    Default 15 yr old daughter diagnosed recently

    I stumbled across your website searching for more information about Wegeners and it has been very educational! Here's our story - my 14yr old daughter was a normal active child, never sick and was a star basketball player. She tore the ACL in her knee and had surgery to repair it. She was cleared by the doctors after 6 months to return to basketball. (I mention that because we wonder if the trauma/inflammation of her ACL tear set off her Wegeners? One of her surgeons mentioned there is some thought that an inflammation trauma may have a link to Wegeners.) A week later she began coughing & was diagnosed with pneumonia & given antiobiotics. We spent the next 2 1/2 weeks back & forth to her pediatrician because she was getting worse. She was gasping for air & they finally sent us to the Children's Hospital & immediately to the ICU on a pulse ventilator. They tested her for H1N1 flu virus and Staph infection in her lungs over & over believing that was the cause of her illness but the tests were always negative. We were watching her die and noone could find the cause. Her heart finally stopped, her kidneys failed and her lungs quit moving air. They put her on ECMO (life support) to save her. The team of doctors working on her were wonderful & didn't give up. She had many blood transfusions, plasma aphersis, kidney dialysis. She was on ECMO unconscious for 2 weeks. She spent Christmas and her 15th birthday on life support fighting for her life. Her lungs became so full of holes that she had 8 chest tubes over a period of 3 weeks to relieve pneumothorax. The nephrologist asked for a PR3 test and her level was 871 which seemed to indicate Wegeners. (They had 3 other children diagnosed with Wegeners in their ICU in the last 2 years.) She was too sick to do any biopsies so they proceeded to treat her as if she had Wegeners because they had no other options. She slowly began to improve. As she improved, the holes in her lungs began to heal & her kidneys returned to good function. One of the many miracles was that she was able to breathe on her own without a ventilator after 4 weeks. They were able to do a kidney biopsy after 2 months & Wegeners was confirmed. She spent 4 months in the hospital but still had a hole in her lung (officially diagnosed as a bronchial pleural fistula) which required a chest tube to relieve the air so a pnuemo didn't develop. She developed an aspergillous fungus in her lungs. She could not have surgery to repair it because her lungs were so fragile. Our pulmonary doctors had never treated a pediatric patient with Wegeners and a bronchial pleural fistula. Her medicines (mainly high doses of prednisone & cytoxan) kept the hole in her lung from healing but without prednisone the Wegeners would attack her lungs so it was a tug of war between what was best for her (and the different teams of doctors). Rheumotology stepped down & let nephrology take over since Wegeners was attacking kidneys & lungs. Pulmonology wanted less steroids but nephrology didn't want to reduce the steroids & let the Wegeners take over. With much prayer we decided to give her body time to heal & keep the steroids at 60mg & spent a total of 6 months waiting & watching the bubbles in her portable chest tube show the air leak. One night she had pain in her back & said something felt different but she wasn't scared. There were no bubbles when she breathed which would mean the hole had finally closed. We rushed to the hospital, they clamped the chest tube & no pneumo developed. It was a hallelujah day! 6 1/2 months after being on life support, she was finally free of all tubes and all holes were healed. Today she is on many medicines - prednisone, voriconazole (for fungus), Cellcept, Bactrim DS, Losartan. Her doctors approved for her to return to school 3 weeks ago with her classmates. Her life has changed completely & her 'new normal' consists of 15 pills daily, washing her hands frequently & wearing a mask when she is around groups of people! She is studying chemistry and has decided to become a doctor now! She hates prednisone with a passion (going from 110 pounds to 140 & having moonface)! But she has a good attitude. Her friends are very supportive and have the slogan "Weggies Unites Us". I told them ya'll were working on T-shirts! I hope you have some ready by Christmas. We will order many!!

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    Well I am speechless. That is one of the worst cases I've heard so far-- in someone who survived, that is. I've read that chest tubes are excruciating. I can't imagine what she must have gone through with so many!

    I'm glad you found us. Please stick around and let us help you with whatever you need.

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    I am curious as to how we can get the medical field to test for autoimmune disorder...especially after reading this. I know Wegs is so far off the scale...but anymore delay and she could have not made it.

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    It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.

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    Welcome Weggieparent! It is a miracle she made it and the doctors finally ordered the labs to figure this out. Many doctors think WG is so rare that the chances of someone getting it inconceivable. I am too very glad you came to this forum and we are here to help.

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    I read this post earlier today, but it got me so emotional I couldn't respond at the time. It's a miracle she survived... So glad you found us, and shared your daughters story with us. My symptoms started like your daughters did, and I know how scary it is to be seemingly healthy one week and then the next to be in the hospital with chest tubes, unable to breath, and being told you're dying but that they don't know why. I'm eternally grateful to the Rhumey who got my case and thought of WG or I wouldn't be here today.

    sangye, I can personally attest to the fact that chest tubes are indeed excruciating.

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    Quote Originally Posted by Sangye View Post
    It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.
    Actually, my new Wegs doc, who is a Wegs Specialist and specializes in Internal Medicine and Nephrology said that he orders quite a bit of ANCA testing done. He said he has ordered hundreds of ANCA testing to be done when he headed a Vasculitis Clinic in England.

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    Phil, I meant that a regular rheumy wouldn't typically order an ANCA for an undiagnosed patient unless there was very obvious involvement of kidneys and lungs to set off their alarm. Your doc ordered ANCAs all the time because he was in a vasculitis clinic--that's normal.

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    Quote Originally Posted by Sangye View Post
    Phil, I meant that a regular rheumy wouldn't typically order an ANCA for an undiagnosed patient unless there was very obvious involvement of kidneys and lungs to set off their alarm. Your doc ordered ANCAs all the time because he was in a vasculitis clinic--that's normal.
    Yes, I see what you mean about the regular rheumys. I think even regualr Nephs order quite a bit of ANCAs.

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    Dear WeggieParent my heart goes out to your daughter and to you. What a brave girl and amazing story and a happy (relatively) ending. I hope that you have had a chance to read some of our youg members stories and some of the ones that have battled this dreadful disease and now are happy mommies. I wish all my best to your daughter and hope she keeps her spirits up
    Jolanta

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