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  • Six year old with Lupus....advice please!!!

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    Old 06-07-2008, 07:07 AM   #1
    mom1999
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    Six year old with Lupus....advice please!!!

    Helllo,

    My daughter will be seven in three weeks. She's been followed by a pediatric rheumie. for two years following an episode of severe hip pain. Since I have MS, the dr. decided to do an ANA test, and it was "1:greater than 3,000".

    Her ANA has come down over time. I think the last time it was 1:160. Her platelets are high, C4 is low. This last visit, the dr. noted the malar rash, as well as arthritis in one of her ankles. She's also had unexplained fevers, and a severe loss of appetite. Oh, and significant fatigue.

    The dr. still did not diagnose her with lupus but said it sounds like "her body is trying to 'blossom' into lupus". So they started her on Plaquenil and naproxen. When we get her blood results back, we'll know more (her ANA was the speckled pattern....I don't know if that makes a difference).

    They want to see her every two months (she's had her heart and lungs checked...everything is ok), as she gets very breathless.

    So what am I to think? Does she have Lupus? Is the dr. not telling me something?

    I'd love to hear from anybody.

    Thank you.

     
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    Old 06-07-2008, 12:03 PM   #2
    kangelle
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    Re: Six year old with Lupus....advice please!!!

    hi there,

    i want you to know i feel your pain, i have a 12 yr old daughter who was recently diagnosised with lupus. it took them almost 5 months to come up with that diagnosis. i wouldnt say your doctor is not telling you something, from our expereince i know it took the lupus quite a while to show itself. we spent a couple months in the hospital and they did more tests then i can list on my daughter....still with no idea of what was going on. my heart goes out to you, i know what you are feeling as a mother wanting a firm answer on what is going on with your child. it has been a tough road for us (my daughter and myself) but we are learning more and more about lupus and how to deal with it. it really sounds like you are on top of what is going on with the doctor and that is the best thing.

    wishing you a wonderful saturday

    k
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    Old 06-07-2008, 02:32 PM   #3
    Goldee
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    Re: Six year old with Lupus....advice please!!!

    I am so sorry for what you are going through. I have a five year old son and I can't imagine going through this with him. I think it is very hard to get a diagnosis for many conditions. I guess doctors are reluctant to put a label on something. I'm not sure why.

    I hope your daughter feels better and you find some peace.

     
    Old 06-07-2008, 07:08 PM   #4
    VeeJ
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    Re: Six year old with Lupus....advice please!!!

    Dear Mom1999, I'm so sorry to read of your daughter's problems. This is just a patient guess on my part (meaning I'm just a patient who has read books & articles), but her doctor may be waiting for more specific tests to come back before making any call.

    ANA is actually viewed as just a "threshold test", because it's positive in more than one disease. More specific autoantibody (etc.) tests can help to narrow the diagnostic range. Only two autoantibodies are considered VERY diagnostic of lupus: anti-ds-DNA & anti-Sm, but there are many more that *can* be seen in lupus as well as in other conditions. You chould ask for & keep all lab results.

    There's a strict, standard list of criteria used to Dx systemic lupus. You can find it in the "sticky posts" at the top of the thread list. To support a Dx of systemic lupus (SLE), you must meet at least 4 of the 11, at some time but not necessarily all at once. You'll notice that only several involve bloodwork results. And there are two other "stickies": one describes antiphospholipid syndrome, a clotting disorder; and the other discusses "alternative criteria", things often seen early on in people who later develop lupus.

    My heart goes out to you both. While I really hope her awful episode goes no further, if she does indeed have a rheumatological problem, she has already gotten thru the door to the right specialty, early on, when she can benefit so much by having appropriate help.

    There are two comprehensive lupus hardcover authors that you can find in most libraries, should you want to start reading. One is Dr. Daniel Wallace, and the other is Dr. Robert Lahita.

    I hope you can post updates when you have the time. We'll all be thinking of you both. Sincerely, Vee

     
    Old 06-07-2008, 09:14 PM   #5
    mom1999
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    Re: Six year old with Lupus....advice please!!!

    Thank you all for your responses.

    My daughter does have at least four of the 11 criteria to diagnose Lupus, but I'm in no hurry for the diagnosis. Just not sure why the dr's seem to be reluctant to give a diganosis when she has these issues. They do say she has a "rheumatological condition".

    To the mom of the 12 year old, I'm so sorry to hear what you're going through too. Its so hard to see our children suffer.

     
    Old 06-08-2008, 08:13 PM   #6
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    Re: Six year old with Lupus....advice please!!!

    I think insurance is part of the reason Dr's don't want to diagnose Lupus quickly. I'm not sure why, except that it could cause problems if you have a gap in your insurance coverage at some point, then a company may not want to cover you.
    Does anyone else think that is a reason?

     
    Old 06-08-2008, 08:55 PM   #7
    mom1999
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    Re: Six year old with Lupus....advice please!!!

    Honestly, I can only think that they don't want to lable her yet. I went over her bloodwork from six months ago, and it all pointed to lupus even then. And now, her hair seems to be falling out. One more sign. Her eyes are really puffy too. Is that a symptom?

    Hopefully tomorrow I'll hear from the dr. I'm anxiously waiting.

     
    Old 06-08-2008, 09:11 PM   #8
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    Re: Six year old with Lupus....advice please!!!

    Mom1999, The most definitive findings in lupus are positive anti-ds-DNA & positive anti-Sm. Either pretty much seals the Dx quickly, as they are seen ONLY in lupus. I view those two as "weighing more".

    Some criteria seem much more general---probably "weighing less"--- because they're seen in multiple conditions, not just lupus. I met some of those, too: sun sensitivity, arthritis, low WBC; but those alone weren't enough to prove lupus. Then my rash was proven to be SCLE annular (a lupus-specific rash) & I tested positive for anti-Ro (seen in SLE, SCLE & Sjogren's), so those last two findings finished off the Dx.

    Maybe he's still looking for something that "weighs a little more". (Just a guess on my part, of course.)

    And maybe there are other close cousins possible, in his mind? Today I saw an article today on juvenile RA (JRA). What caught my eye most was a mention of high platelets in JRA. (The article also mentioned positive ANA & facial rash accompanying fever.) Anything I've read about platelets in lupus cites LOW platelets.

    Some people are Dx'ed with UCTD (undifferentiated connective tissue disease) for years on end. At least her dr. has gathered enough knowledge & is sure enough of the "ballpark" to prescribe Plaquenil & an anti-inflammatory. My doctors gave me nothing for many years, because they were waiting for 100% specific answers.

    Good luck with her next appt. Bye, with best wishes to you both, Vee

     
    Old 06-13-2008, 01:25 AM   #9
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    Re: Six year old with Lupus....advice please!!!

    Quote:
    Originally Posted by mom1999 View Post
    Helllo,

    My daughter will be seven in three weeks. She's been followed by a pediatric rheumie. for two years following an episode of severe hip pain. Since I have MS, the dr. decided to do an ANA test, and it was "1:greater than 3,000".

    Her ANA has come down over time. I think the last time it was 1:160. Her platelets are high, C4 is low. This last visit, the dr. noted the malar rash, as well as arthritis in one of her ankles. She's also had unexplained fevers, and a severe loss of appetite. Oh, and significant fatigue.

    The dr. still did not diagnose her with lupus but said it sounds like "her body is trying to 'blossom' into lupus". So they started her on Plaquenil and naproxen. When we get her blood results back, we'll know more (her ANA was the speckled pattern....I don't know if that makes a difference).

    They want to see her every two months (she's had her heart and lungs checked...everything is ok), as she gets very breathless.

    So what am I to think? Does she have Lupus? Is the dr. not telling me something?

    I'd love to hear from anybody.

    Thank you.

    Hi I am a person that was also recently diagnosed with SLE
    here is the story i was in new york during my studies when i started getting sick i had a fever and sore throat and constant headaches and was getting very sick day by day the only thing the doctor told me was to take tylenol i couldnt take it anymore slowly i started to lose my appetite and also couldnt eat anything so i went to the doctor again the doctor put me on antibiotics and said i had bronchitis.
    so i took the antibiotics for ten days as the doctor said but i only felt like i was getting worse so i went back to the doctor and i also starting feeling that my throat was getting worse and i had this strong pain inside it and i couldnt eat anymore i told the doctor that again he told me take ranitidine
    but i only got worse i started feeling very weak and i couldnt even eat a single thing anymore so i gave up and called my parents that lived in Vancouver BC and because i also noticed that my joints started hurting and people that were around me started telling me that i had started getting very skinny.So my parents said come home i went home and went to my family doctor from my childhood he listened to my whole story and prescribed depression pills for me but my parents did not let me take any depression pills and i kept taking tyelonol but what happen was that i couldnt even eat anything anymore one day i woke up in the morning i sat up for breakfast and i tried to eat but i started to vomit thats when my parent said thats it we are going to the hospital when i went to the hospital i told the doctors the whole story of what happened so they started all different types of tests they did the hiv tests and much more i also had all different types of doctors coming to see me it was near the fifth day when this rheumatoligist walked into my room and examined me very closely and ordered a few blood tests and then after those tests they came to a conclusion that i had SLE but they were not so sure because i didnt have too many signs but the doctor checked my wheight and asked how much i used to weigh i said 210 pounds so he told me that now i weigh 175 i was surprised then he put me on plaquenil and steroids thats when i started to get better after a month he put me on imuran so now i am much better and i can also eat

    So my personal advice to you is to try a different doctor or to get your doctor to refer you to a rheumatologist because the earlier you figure out the problem the easier to control it is to control i also hope that ypur daughter gets better soon and that it is no big problem best wishes from me to the mother that is going through alllot for her daughter

     
    Old 06-17-2008, 07:36 PM   #10
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    Re: Six year old with Lupus....advice please!!!

    I feel for you. My daughter just turned 8 and she has had a positive ANA for 5 years. Joint pains either knee, elbow, or ankle. Comes and goes. fatigue comes and goes. swelling comes and goes. fever unexplained and fatigue. FyI doctors usually dont want to diagnose before the onset of puberty. A positive ANA with a homeo. speckled pattern is classic. so is anti dns dna. and C3 C4 being low. Sounds like she is on the right meds to start thank goodness. give it time. the closer she gets to puberty shell either feel worse or not change.
    pearl

     
    Old 06-20-2008, 06:48 PM   #11
    mom1999
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    Re: Six year old with Lupus....advice please!!!

    Pearless, did your daughter get diagnosed with lupus, or are they waiting? I don't know if there's a way to PM on this board, but if there is, please PM me. I am having such a hard time finding people with young ones with lupus.

     
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