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Thread: 14 yr.old son diagnosed yesterday

  1. #11
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    Rage on Carrie, you're obviously a fighter, we're here for ya, your son will learn how to fight...just keep keepin on...best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hey Carrie, I am so sorry for your struggle,and that of your son, but I am impressed by your anger since I believe it will be channeled, once the shock has worn off, into energy to tackle this situation. Please do take care of yourself, esp as you are his "everything."

    My 14 year old daughter was diagnosed this past March. Pediatric WG/GPA has some different treatment protocols etc than Adult, keep in mind. And 19 heads are better than 18, so no matter how big the medical team is, make sure there is a WG/GPA expert (in Pediatric Rheumatology) at the very least as a consulting physician. There seems to be only the hard way for a WG's patient to find out care has been inadequate (as you guys have glimpsed) so better safe than sorry.

    All best wishes, from our house to yours.

  3. #13
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    Carrie, welcome, and I understand your shock and anger at this overwhelming news. People have already offered encouragement, and I will echo that your son stands a good chance of getting this under control and having a pretty normal life. Regarding docs, the ones you are working with now, if you like them, can always consult for free with the specialists at the Cleveland Clinic. Check the VF website for info about that.

    The best immediate advice I can give you for your peace of mind is to stick with this forum, ask questions, read both current posts and those in the archives, and keep in touch with us about what is currently going on with your son. There are some very knowledgeable people here and they are glad to share. We are here for you.
    Anne, dx'ed April 2011

  4. #14
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    Carrie,
    I wanted to add my welcome to you as well. I was diagnosed in late January 2013 and am still dealing with all that it means. As a mom, I understand how hard it is for your kid to be sick, but, you and he will get through it, you just have to stay on top of things. If you think your doctor is capable of being clear but hopeful, I would have him/her explain things to him. It may take a few times to get through to him. When they diagnosed me,I was in the hospital and every day my doctors came and spoke to me about the disease and wanted me to understand that it was serious but treatable. They repeated information because one can absorb only so much information at the time. I took notes while and after they spoke to me and also wrote questions when I thought of them to ask next time I saw them. That is something you can do. They made a point of saying that the diagnosis was mind boggling and they were there to answer any and all questions. That was very reassuring to me.
    This forum is also reassuring to me. I have learned a lot about various symptoms and how, really, each person is different in the way their wegs presents itself, but there are so many "weggie warriors" here that are incredibly knowledgeable. It really humbles me and makes me feel so fortunate to have found them!
    Best of luck and as Don(?) said: rage on! It is good to get it out!
    Mary
    Mary
    dx'd Janaury 2013
    involvement: lungs, kidney and sinus

  5. #15
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    Hi Carrie and welcome to you (and your son).

    WG is not as rare as the paperwork is saying it is. Just check out the Weggie Map at the top of your screen.
    We come from all over the world.
    It is only rare because the doctors out there, are in the dark about the symptoms and disease and we have many on this forum who are fighting hard to raise awareness.
    Don't believe what you read on Google.
    This forum was my life saver - in that I mean, that it helped to ease my mind and took away the stress.

    Don't hesistate to ask any questions - someone will have an answer.
    Also let your son know that we have many young people on here with WG and when he is feeling better, he may want to drop by.

    Speedy health to him
    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

  6. #16
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    Thank you all so much for your words of encouragement! One of my biggest worries used to be that my son would turn out to be like me...I am hard, kind of cold; I severely lack that filter that most people have when speaking. I am head strong, opinionated and I have a whole lota moxie....I do what I say, I say what I mean, and nothing gets in my way. I hoped for him that he would be softer, more compassionate, more caring....and he is! He is exactly what I hoped...he wears his heart on his sleeve, he is caring, loving; sweet....he is (at his young age) already an award winning artist! He loves to draw and create things. As with any young teen, he has a new girlfriend every other month it seems, and he is completely heartbroken when they break-up. He is a romantic, soft spoken and just a pile of mush.

    Now I'm wishing he was like me...a fighter. I am terrified that he won’t have the emotional and mental strength to look at this 'thing' and kick its ass. He and I couldn’t be more different. His motto is, "I can’t"...Mine is "I will". I desperately need for him to have some of that now.

    A few years ago, I collapsed at work in a heap on the floor...the pain was unreal. It was my gallbladder. Since I work at the hospital, I went directly into the ER and the Doc said it had to come out. They scheduled me for surgery the very next day, which was a Friday. I was at work Monday morning. I didn’t lay around all weekend recovering either....I happened to be moving that weekend. I was loading and unloading boxes on a truck, and then unpacking all day Saturday and Sunday. I NEED for him to have "that".

  7. #17
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    Quote Originally Posted by CarrieG View Post
    I NEED for him to have "that".
    What does HE need? Go that direction, not yours...he will get thru this his way most likely, not yours. Not saying don't be 'you', but do introduce some compassion for his 'view' of this (once YOU allow him to have one)...he needs THAT, and your strength. Hang tough Carrie...this is going to be OK, honest.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  8. #18
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    Carrie, you and your son sound like a great team, and you complement each other with your very different personalities. I think it's likely that he will pick up some your headstrong characteristics as he learns to deal with having Wegs. And you may soften up a bit, too, who knows?

    I got the feeling in one of your posts you hadn't told him yet.... maybe you have by now. But I was thinking about how one would go about telling a young person something like this. I know he already knows he is sick, and may be relieved, as many of us were, to know the cause. I guess I would start out not by saying the scary name of the disease but by explaining that it is a disorder of the immune system, that it is rare, but that more and more people are being diagnosed, so he is far from alone with it, and of course that docs are getting better and better at treating it and people are doing better than ever at living with it. And there are other people his age who have it, some have been on this forum, and I'm sure there must be some in your general area. Perhaps he could meet some of them. Also, once things are better under control, he should be able to resume all of his activities, the artistic and romantic pursuits. It is not contagious! But he does need to be careful about catching germs from others while using immunosuppressant drugs. I have been in public a lot and NOT caught things, but it is quite possible, and precautions should be taken. But that needn't ruin his social life if he is careful.

    We would love to hear from your son here on the forum if he is ever up to it! Though I understand, from his point of view, we are a bunch of oldsters. We do have Rini on here, who I think is in her late teens and somewhere in the midwest; you might check her out on the Wegs map link at top of page or the members list.

    Best wishes to you both as you come to terms with this!
    Anne, dx'ed April 2011

  9. #19
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    Your right...and apparently Im still freaking out. It's easier for me to say "I, I, I" & "me,me,me" because I've lived through so much...I know from expierence that the road he will travel would be easier for him if he had "that". I so badly want to take the hard part of this away from him, and carry as my own...I know I could handle it, and I'm scared he cant. I know it sounds like Im not giving him much credit, but I know him.
    I know it doesnt work that way...I'm just a mom thats worried about her kid...he's my baby. I have him (Sam), and I also have a 27 year old son (Alex), that thankfully, is a nurse.

  10. #20
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    My son was diagnosed when he was 13. Lung, ear and nose involvement. Although he did lose a lot of hearing and has had to undergo two surgies on his ear, he has been in remission and drug free at age 16 for almost a year now. Its a rough rode, but it gets better.

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