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Thread: new member w/13 yo wg daughter

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    Default new member w/13 yo wg daughter

    Hey there. My daughter was dx w/WG in Jan 2010. I have searched the internet for info regarding WG in children and due to the rarity of the dz in children, most of the data is obtained from adult stats. I was wondering if anyone could direct me to websites that cover the pediatric aspects and expected outcomes? I am glad to have found this forum; it is comforting to connect with other WG patients. (my daughter reads this forum also)

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    Welcome Curly, I am sorry that she is so young! I was pretty young when I started with symptoms of WG ....at age 12 now I am 44. I was misdiagnosed as having rheumatoid arthritis, long story.....but I am so glad you are trying to find information to help you and your daughter.
    What symtoms did she start out with?

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    In Oct 2009 she was having seasonal allergy symptoms, no big deal. In Nov she had fever & sinusitis; then got bilateral otitis media; next was loss of voice; nausea & vomiting (off and on); weight loss. By mid Dec she could barely hear and had no voice. Her eyes were extremely red and she had severe headaches. We went through lot of different types of antibiotics w/no resolve. I had been to the ER a couple of times and they just blew it off w/their typical 'treat and street' attitude. Finally, the ENT we had been seeing for a couple of weeks agreed to hospitalize her upon my request. They did an MRI and found the ear infection had spread to the dura on her brain. I told them I wanted her transferred to a children's hospital and they complied. The children's hosp was great. She ended up having both mastoid bones removed and tubes put in both ears. But she had all these weird symptoms and they couldn't quite figure her out. Her SED was 130 and her CRP was in the mid twenties. Then she went into kidney failure. The nephrologist did a battery of tests and the c-anca came up positive so they biopsied her kidney and that's what nailed down the WG dx. Since mid Nov I had been telling all the medical people we saw that I thought she had an auto immune dz but they all looked at me like I was crazy coz we have no family hx of lupus or RA. She has had three suspension microlaryngoscopies, bronoscopies, and tracheal dilations one of which her trachea was painted w/mitomycin-c (spelling?). She is also on the cytoxan IV and prednison PO tx along w/various other meds. Except for the recurring tracheal stenosis, her kidneys haven't gotten any worse and she has been holding her own.
    I am interested how your illness was when you were a kid and how it has been in you adult life. There doesn't seem to be any follow through studies from peds to adults.
    Last edited by curly; 06-27-2010 at 03:38 PM. Reason: spelling error

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    Curly from what I can remember and had to ask my Mom too what happened. I complained of joint pain ( every joint and the bottom of my feet hurt to walk on), chronic bronchitis, left red eye, fever and weight loss. Finally went to Children hospital in Chicago and was diagnosed with RA ( I was 12 no kidney involvement). They treated me with aspirin for joint pain!?? The aspirin kept the joint pain away.
    At age 15 I was getting worse but didn't say anything to my mom because I was very active in high school ( track, crosscountry, joined many activities) and didn't want to miss out. I ended up at Children Memorial Hospital on/off for about 2-3 months with kidney failure, severe anemia, weight loss, joint pain, fevers, bronchitis symptoms. The Rhuematologist thought I had lupus or some other wierd autoimmune disease. I was given high pulses of prednisone and then later on cytoxan....I was not complient on cytoxan because it made my hair fall out.
    At that age I was not mature and no one sat down to explain my condition and the seriousness of this disease! Anyways my kidneys were damage but I did not need dialysis. But was told later in life I will need a kidney transplant. At the age of 24 I got a kidney from my brother ( perfect match) and was put on cyclosporine and prednisone and that kept the WG quiet , but I had a runny nose . ONce the prednisone was reduced the symptoms got worse....sinus, ear and jaw pain. I even had abdominal pain. I went to so many doctors they all thought I was crazy and I worked at a local hosptial working as a Case Manager.
    I probably am leaving out some other details, I was diagnosed in 2008 .....
    I am doing good despite severe maxillary damage and I am constantly on antibiotics from infections. I have accomplised alot even though I felt like crap most of the time, I am a fighter. I think that is how I survived! Your daughter will do great. With a early diagnosis and advanced research she will be in good hands. I hope she will see a great Wegeners specialist, because that will be life saving. I hope the doctors are educating her about her disease and the importance of taking medicines.
    IF you have any more questions let me know. I am glad to help.

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    Hi Curly, welcome to the group. Well, we are getting a lot of parents of kids joining the group lately. Lots of them around your daughter's age. It's heartbreaking to imagine. Your daughter has really gone through tough stuff already.

    There is a Yahoo group just for parents of kids with Wegs. I don't know the name of it. You have to go through the VF to join, as they are understandably protective of their privacy. I hope you stay active in this group even if you join the parent's group. A number of our members are like Elephant-- dx'ed at a young age and are adults now with tons of experience to share.

    The lack of long-term data on children reflects the high mortality rates for people dx'ed decades ago, when treatment options were quite limited and highly toxic.

    If there is any silver lining, your daughter has been dx'ed at one of the best times in Wegs history. There is more research than ever, a wider variety of drugs available than ever before, and a knowledge base among Wegs specialists that is incredible. Just last year a new drug (rituxan) became one of the mainstream Wegs drugs. Major studies are underway this year about plasmapheresis and other drugs. There is more hope than ever that your daughter will do well.

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    Hi, Curly -- welcome to the group. I have subglottic stenosis with minimal tracheal involvement as well and have already had one surgery and balloon dilation (with myomicin also). How long is your daughter going between surgeries at this point? I had mine in March and doc says we will probably be looking to schedule a second one in late fall/early winter if things stay on track. So far doing better than expected. My guy is one of the top WG researchers in the ENT field and since that's where the totality of my symptoms lie and this point (SS and a saddle nose) I've really made it my business to educate myself about this area. Has your daughter's nose been affected also? The stenosis and saddle nose are frequently seen together (saddling meaning the destruction of the bridge due to tissue death and/or holes in the septum). It can be quite surprising (naturally) and really do a number on your self esteem. I hope this doesn't happen to your daughter but it might, so just be aware.

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    Doug Guest

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    Curly- I am sorry to heart about your daughter, but agree that I hope you continue in this forum, which is fairly informal but very, very supportive. For the Vasculitis Foundation, please use this link:

    Front Page | Vasculitis Foundation

    You will find a wealth of information in it, straight-forwardly presented.

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    Hi Curly, My son, Carter is 8 years old. He was diagnoised in May 2010. There is another WG group for parents of kids that are diagnoised. It is on yahoo groups called, Parents4wegeners. I can take a few days to get approval though. I think you will be surprised how many children there are out there with WG, I was.

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    Quote Originally Posted by talentx7 View Post
    I think you will be surprised how many children there are out there with WG, I was.
    That is so awful to hear.

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    Thank you all for the welcome and sharing your experiences w/me.

    Elephant, I am amazed you survived all your childhood complications especially since you were not forthcoming with your symptoms. But I think that is normal for children coz they want so badly to be 'normal' and not different from their peers. We (myself and the MD's) have explained the importance of her meds and the dz process and she does understand. Even with that she was so upset about all the pred wt gain and she weaned herself down on her pred w/o telling anyone until she started having respiratory distress again. Now she is very compliant w/her meds. She has also had lots of joint pain off and on, even before she got really sick. It has affected her GI tract as well. Keep fighting Elephant and thanks for the support/info; you are the first person I have been able to talk with who had wg as a kid, I thank you for your candor.

    Sangye and Doug, thank you for the vasculitis resource. I am going to utilize that information. btw, love your pet pics!

    JanW, my daughter does not have saddle nose but the tracheal stenosis has been quite a problem. She has had one sx/mo x3mos. They have not had to lasar anything yet thank goodness.

    Talentx7, so sorry to hear about your son. I hope he is doing well. I too live in Calif. And like you, I have been surprised at how many people on this forum are telling me about kids who have wg. It makes you wonder what are the real numbers? I am sure, as w/adults as well, many cases go undx'd or misdx'd which is very tragic.

    Thank you all again for this wonderful forum and your support.

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