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Thread: Pediatric WG/GPA Sub Forum

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    andrew's Avatar
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    Default Pediatric WG/GPA Sub Forum

    Greets
    Can I get thoughts on the creation of a separate sub-forum on pediatric WG/GPA? Is it a good idea? I think it is but would love some feedback. Two things to consider:

    1. Does perdiatric WG/GPA get treated differently as opposed to when it manifests in adults?
    2. Would parents read the pediatric sub-forum and think that's all the information available and not check other sub-forums?

    Discuss
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    Quote Originally Posted by andrew View Post
    Greets
    Can I get thoughts on the creation of a separate sub-forum on pediatric WG/GPA? Is it a good idea? I think it is but would love some feedback. Two things to consider:

    1. Does perdiatric WG/GPA get treated differently as opposed to when it manifests in adults?
    2. Would parents read the pediatric sub-forum and think that's all the information available and not check other sub-forums?

    Discuss
    I would prefer that it be done as a thread and messages be tagged with an identifying label as having pediatric content. My concern is that if it is set up as a special forum many of us might not look at posts there since that is not our main concern and thus a lot of valuable input might be missed.
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    I agree with drz, but I can also see the need for them to have their own area, without others making incorrect comments.
    As far as I can tell, pediatric specialty and treatment is a little different to that of Adults.

    One reason I would like to see it remain with the adult one, is that all relevant pediatric information could get missed once the child becomes of age and treated as an adult, then they would need to come across to the main forum. If it was one, then a post from 3 or 4 years ago, would be easy to still access, as an adult.
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    Thanks for the input! Anyone else?
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    At first thought, I didn't have a strong opinion either way. However, I got to thinking about my grandkids. They are unlucky enough to have a family history of GPA through both parents. If there's a genetic predisposition toward GPA, my little people would seem to be more likely to develop it. Thus, put me down as in favor of a pediatric GPA subforum...
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    Thanks andrew. It was my idea. I thought that it can help parents read other parents' threads more easily and be able to know with whom they can connect. It can help them feel less alone and less frightened. I think that being the caretaker is more scary then being the sick one. Especially if its one's kid.
    You can make a sticky in the upper part of the subforum, inviting parents to check other forums, and also maybe with more reccomendations.
    There were few cases lately so they can be added to start it. If you want me to help, I can mark those threads.
    Anyway, the best will be to wait for @whatthewhat comment. She knows best ♡
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    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
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    Quote Originally Posted by Alysia View Post
    Anyway, the best will be to wait for @whatthewhat comment. She knows best ♡
    = I'm having signs made with this quote and posting them all about my house ;-)
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    What a long way we've come when we spend time on the idea that Wegeners strikes all ages, and how sad a reminder of that fact.

    My two cents:

    1. Yea, pediatric-onset WG often manifests differently and definitely moves differently than adult-onset WG. Also treatment is often more rigorous (and, rarely, much less rigorous.) There's a lot of overlap but significant differences in both disease & treatment.

    2. I totally agree with the above concerns both that the wisdom from adult patients would be lost as they might not be as likely to check the thread and also that parents of pediatric patients might not look other places on this forum.

    Some more two cents :-)

    I gained SO much by reading threads by and for adult patients. At the very least, I knew my girl would be an adult patient some day! But also the collective wisdom & experience were like being handed the best textbook on the disease I could wish for. I've told Alysia that Dr. Phil was an invaluable help, but Annekat and Alysia and so many others too really took my hand, so to speak. I tell other pediatric WG parents about this forum; when you see "guests" are here, consider they might be parents reading all they can, in a hospital room somewhere - because that was me.

    Which kind of brings me to my second point. A parent might stay unregistered, only using the search engine or etc, because they are dealing with a minor. This is a public forum. I am cautious about what I post here for myriad reasons and almost all of them have to do with the age of the patient in one way or another. I maintain a "secret" FB page for parents of pediatric WG patients because it allows space to discuss, vent, rage, weep, question, and support away from the public eye.

    And one more fwiw: I have tried to tag any posts I made with words that would help other parents looking for commonalities. I think that can take the place of a thread. In a way :-)
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    Quote Originally Posted by whatthewhat View Post
    = I'm having signs made with this quote and posting them all about my house ;-)
    Here, I made one for you...

    2017-01-17 20.22.22.jpg
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    Alysia
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    Here, I found my sweet love, my beautiful Phil
    http://www.wegeners-granulomatosis.c...ggren-254.html
    http://www.wegeners-granulomatosis.c...continued.html
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on"
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you

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    I've learned from the parents of children with this disease, and I think parents can learn a lot from all of us too.

    That said, as long as the sub-forum shows up in my New Posts button like the rest of the new stuff, I'm all for giving parents a space of their own.

    Great idea!
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