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Thread: Hi... and needing some advice for 10 year old daughter

  1. #11
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    Welcome Joy! I also have a daughter (now 19) who dealt with autoimmune symptoms throughout her childhood. She finally was given the label of "undifferentiated connective tissue disease" and started on treatment. I can't tell you how many battles I have fought and how many specialists I have taken her to (dozens). She has multiple medical issues, so her experience will hopefully be very different than your daughters. The point is, you have to keep fighting, no matter how discouraged you get. It sounds like things are actually moving along quite well for your daughter in terms of tests and appointments. If you reach what seems like a dead end, stay strong. Doctors REALLY want kids in school, so we found that with some docs it helped to emphasize how much our daughter loved school and how hard it was for her to miss class. Unfortunately, a few docs assumed that she had school anxiety and that was where her symptoms were coming from. When that happened, I looked for another doc. As a mom, you walk a fine line. You have to be a strong advocate for your child, but you also run the risk of being labeled overprotective or enabling, or just a plain pain in the a$$. I've found that being straight forward, keeping good records and leaving my emotions at the door is helpful. Coaching my daughter to speak up for herself has also been important. A plea from her for help has changed the attitude of more than one doctor.

    Please keep us up to date on what is happening. I know I get emotionally invested in people's stories and it is sad when they never come back to tell us what happened.

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  3. #12
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    Gizmo,
    I cannot stress enough my heartfelt thanks for your post. (I have read quite a few posts on this site and they're so full of understanding, warmth and a lot of good advice inbetween~!)
    I think I have already been labled as a little overprotective, especially that my daughter is also home-schooled!) I have stressed how much she normally loves riding, and swimming and jumping on the trampoline with her friends, but she doesn't feel well enough for these things she once enjoyed.
    Your story, although different in some ways, brings back a resounding yes... I also have to encourage my daughter to speak for herself, I've kept a diary, I've done my very best to sound more factual rather than overly anxious.
    I have been told that my daughter's appointment should be brought forward if her results are positive... however, as we haven't actually seen a specialist yet since it all began 3 and a half months ago, I'm wrtiting to him to make sure.
    Thanks, once again, all of you who have so kindly taken time to answer my query. I can't tell you what it meant to know that people from local and wide were thinking of us!
    Joy

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  5. #13
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    Joy, in both of your posts it sounds like you are doing a great job with your daughter. We have hit many walls with our daughter, and I know that's when you really have to pull out those mama juices and keep fighting. One thing my daughter has said on multiple occasions is that she appreciates that I keep looking for answers, even when she has lost hope. She even says that when I irritate the docs!

    You are on the right track with comparing how active she used to be to what she is able to do now. Docs seem to hold athletic kids in higher esteem. I think the same is true of adults. I've often wondered if I were thin and a runner/skier/dancer, would the docs take my complaints more seriously? Why is it more important to get a runner back in their next marathon than it is to get me to be able to walk a mile? Whoa, I just went way off topic. Sorry.

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    Hi,

    My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

    I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

    I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
    Thanks for 'being there'!
    Joy

    P.S. If there's any advice, I would really appreciate it!
    Last edited by Hquest; 07-13-2011 at 04:29 AM.

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    be her advocate.
    tell it like it is.

    make sure they do not dismiss anything as unimportant.

    i hope all goes well.......... she gets the meds she needs!

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  10. #16
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    Quote Originally Posted by Hquest View Post
    Hi,

    My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

    I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

    I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
    Thanks for 'being there'!
    Joy

    P.S. If there's any advice, I would really appreciate it!
    I've got my fingers crossed for you both. Here's hoping it goes well and they're understanding.

    Keep us posted on the results!! We're pulling for you here

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  12. #17
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    Quote Originally Posted by Hquest View Post
    Hi,

    My daughter's appointment has been brought forward due to her tests results. I didn't even ask what the results were... I was kind of in shock I suppose. She's seeing a consultant Rhuematologist today to see about treatment. I must admit I am feeling ... I don't know exactly what to feel right now, but I'm unsure about the treatments out there as she's so young, but if she needs them then....

    I suppose I just needed to share with you all as I'm so concerned. I'll need to take time to look into it all a bit more...

    I know you all understand... whether you're going through this awful disease yourself or you're caring for someone who is...
    Thanks for 'being there'!
    Joy

    P.S. If there's any advice, I would really appreciate it!
    Hi Joy,

    I'm wishing you and your daughter all the very best refering the Rheumo appointment...if they're able to treat your daughter, ask what affects the drugs may have etc so it helps you besides your daugther knowing what's going on.

    Please keep we updated if you don't mind and also on her bloods.

    Terry xxxx

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    Hquest (07-14-2011)

  14. #18
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    Hi,

    Thanks Steve and Elo!

    My daughter has now been given a diagnosis of SLE and has been put on Quinoric (Hydroxychloroquine) to begin with. She's to have further test such as ECG, MRI and a blood dye test. So that's as far as I know right now. The reality of it all is slowly sinking in.

    It meant a lot to know that there was support on here.

    Joy

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    Hi Terry,

    I've just noticed your message... I'll fill you in soon... just about to put my daughter to bed.

    Thanks for your best wishes!

    Joy

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    Hi my daughter is now 22 but your story brings back haunting memories..........i was told time and time again it was anxiety when her chest hurt and it was hard to breathe at about 10 11 years old....she complained of fatigue joints hurting.....then vitiligo.....ill cut to the chase.....even though i have lupus and ra....my mom ....an aunt they meaning my daughters pedi wouldnt listen......so my daughter did internilize it...scared her felt lousy no answers.......let your daughter know there are solutions for her.....that dr.s sometimes need more pices to be put together dont let her feel she is imagining it but dont let her feel theres no answer. My daughter is now 22.......withdrew from college 2x hospitilizations......kidney biopsies because her kidneys affected...she kept getting utis her pdei just gave her antibiotics one a sulfur druf landed her in the hospital.....when u have luous u dont give this drug......ok no need to hear my story.....go with your gut......insist......test.......push......and let your daughter know there is an answer....and she can feel better.....this is very hard on you...good lord i know..........god bless you......have lupus panel.....kidney work up..everything

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