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Thread: New, Daughter - 13 - just Dx with WG

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    Default New, Daughter - 13 - just Dx with WG

    HI, I am Lynn and I am new here.

    I am here because my 13yo daughter Abby was just diagnosed with Wegner's. 6 years ago at 7yo she stopped being able to walk and move her arms so she was diagnosed with JRA which quickly became psoriatic arthritis. After 2 years of being for Psoriatic JRA she has cartilage breakdown and developed a subglotic stenosis, granulomas in her sinus and on her eye lids. Her ANCA was always negative and her kidneys were fine then. In the last 6 months she has had traces of blood in her urine so we (she) just had a biopsy 2 weeks ago. Her diagnosis has been revised to WG.

    While recovering in Children's Hospital in Detroit MI, we left our now 13yo alone for 2 hours and she decided to look up her diagnosis on her own and scare herself with the bad and the ugly. So we have been doing our own learning by trying to find others who have the disease and can help her and us understand what she is going through and the treatment.


    For now, she has been put on cytoxan infusions. They took her off methotrexate and folic acid that they had her on as well as celebrex. They left her on: Allegra, Qvar inhaler and Ventolin, Zantec, Tylenol, and have her on 80mg of prednisone.

    Needless to say Abby (Abigail) has not had a typical childhood. But we are trying to keep it as normal as possible. This year will be her freshman year in high school and the doctors have told us to be prepared for a hard year to year and half. She has missed a lot of school even school years but we have managed to not lose a grade level. She is worried she will miss her freshman year and all the high school functions but we told her we will trying to keep it as normal as possible - hospital stays as limited as possible of course.

    So that is what lead me to finding all of you.

    Lynn ~ Mom to Abby

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    Lynn and Abby, welcome to the forum, while I am glad you found us I am sorry that you needed to. There are a number of folk here that have loads of experiance and can probably answer nearly any questions you have, so if you want any advice please do ask.

    Abby, I guess one of the places you looked for info on WG is Wikipedia. Some of what they tell you is correct but quite a bit of it is out of date, and there are new treatments being tested. So remember while it is not a nice illness it is not all doom and gloom.

    Jim
    You give but little when you give of your possessions. It is when you give of yourself that you truly give. Kahil Gibran

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    Hi Lynn, welcome to our little group...it's a very special group with a lot of special knowledge and a great deal of compassion, albeit spiced with some dark humor sometimes. Good on Abby for confronting the disease even tho it may be scary at first...I thought I'd signed a death warrant when I began digging. But, as Jim points out, it is NOT all doom and gloom, and because Abby is younger than most of us, she stands a very good chance of getting into a remission. Some of the drugs, outside of the cytoxan, seem a bit much or not usual to what many of us take. For example, folic acid is far more effective than Zantec, 80 mg of pred seems awfully high (that alone can keep her from doing things), Allegra is for allergies and tho she may have sinus damage, as do I, it is not particularly effective for the sinus damage. So, while I don't know her particulars, I would be interested if you are in actual contact with a WG expert, a doc who has/does treat WG with experiential aptitude. So much is not known, that a regular doc, even a well meaning one, ends up reading out of a book, and frequently goes too far or too little. Please make sure you can or are using a WG expert. Best of luck. Go Abby! You can do this!

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    I feel so very sorry for this to happen to someone so young. But, as Jim and drz said, it is not all downhill. Many strides have been made with both wegener's and psoriatic arthritis. It's not going to be easy, but things will get better.

    Something that will probably be hardest on her is the pred. She will have a weight gain and that could be pretty disheartening for a young lady going into high school. You might want to look at Marta's website ( WeggiesUnite: Home: Zazzle.com Store ). She puts a humorous twist on the pred issues. Marta is one of our member's in the great white north of Canada, eh.

    I'm glad you found us. Most of us have been around the block with the darned wegs thing and freely talk about all aspects of it. Remember that none of us are doctors, tho. We just have our own experiences and each of us is very different.

    You can see in my sig that I also have wegs plus psoriatic arthritis.

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    Welcome, Lynn, and I hope Abby also feels welcome to get on here and say anything or ask questions. A lot can be learned here not just from the current posts but by looking at older ones under different headings, or doing searches on specific concerns. Without this forum, I know that many people with Wegener's would be a lot more in the dark, scared, and misled by those who don't know as much, or like Don said, are dispensing outdated information. So, it's a very good thing that you found us. There are some very smart and knowledgeable people here, along with some funny people and great storytellers. You will both feel very much less alone here and encouraged about the likelihood of getting through this and on to a more normal life.

    It sounds like Abby suffered several years with various WG symptoms before being diagnosed. I agree with Don's advice about finding a Wegener's specialist, if possible, to see in person or have your doctor consult with. There are several specialist centers in the US and a list of specialists on the Vasculitis Foundation website. And depending on where you live, someone here may have a specific recommendation.
    Last edited by annekat; 07-10-2012 at 12:24 PM.
    Anne, dx'ed April 2011

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    A lot of people have good things to say about the Cleveland Clinic which is probably the closest Vasculitis Center for you. It would be good to get a referral to them if possible. Just for peace of mind if nothing else. My specialist in Salt Lake came from the Cleveland Clinic and he is very impressive.

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    Hi Lynn and Abby and welcome to the forum.

    We have many carers of children with WG on here and also some young teenagers/young adults that have received the diagnosis of WG.
    I'm sorry that Abby has had to go through the pain of JRA and now WG.
    I hope Abby can join us and see that even though things seem really bad at the moment (and they probably are), it will get better and hopefully she will find full remission like many of our members have.

    Take care of each other and remember to ........
    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 Lynn and Abby!

    A few tips: I think the main thing I would like to say (and I think I read it in this forum) is get to know how your body responds to different drugs, foods etc. This can help you know when you are having a flare (if you have more subtle symptoms like me) or when something is just not "right". And be sure to tell the doctor when this happens.

    Also a good thing to do is have a list of your meds: when you started a drug/treatment; how much/often; when and why treatment was discontinued. It's much easier to whip out this piece of paper than to have to try to remember everything when you see a new doctor (or even the same doctor!). By giving a typed copy to your doctor it becomes a part of your medical file. Doctors and nurses have told me how much they appreciated the list.

    Everybody responds to treatments differently. My lifesaver for the chemo period of treatment was olivene tea. It helped soothe my irritated liver and eliminate some of the water-weight gain.

    This is your own personal journey and I hope we can help smooth out the rough spots. Much love and hugs to you both.

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    What Hopeful said is sooooo true! Everyone reacts differently to the various drugs. Just over the past week, I had several visits to the ER due to an unknown sensitivity to a particular class of drugs. Absolutely no fun.

    I also keep a list of all my drugs (15 at the moment), dosage, and who prescribed them. At the top of my list is the name of the diseases I have. If you have to go to the ER or a different doctor for some reason, you would be surprised how many don't know what Wegener's is. On the same list, I also have all my surgeries (6), and the phone number/fax number for each of my doctors (5 different docs) and the phone number for my drug store. I carry that list with me everywhere. It is indespensible.

    Some people on the forum also keep a journal of how they feel from day-to-day, activities they did, drugs they took, and things like that. It helps to be able to go back and look for patterns.

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    Thank you everyone. You give me great hope for understand more. You knowledge will be a great help. As for Abs, I am not sure she will "join" and post on her own. She may use my acct from time to time. She is really shy, she has tried to hide her disabilities for a long time. She will be reading what you post to me. Some of my questions are actually hers.

    I will figure out the signatures. I will also give a much more detailed history of what she has gone through. This has been a long journey so far and as a child she just wants to be normal, what ever that is. She has never been able to play sport/cheerleader/or just run...and it doesn;t look like she will being playing soccer with her big sister this year either (she had a really good year last year and was hopping to be in remission with everything..

    I need to start a journal and go back to the start of her illness. Thanks for the idea.

    Lynn

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