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    Old 01-30-2015, 10:44 PM   #1
    beebs77
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    5 year old health issues positive ANA

    Hi there,

    My little boy has been sick on and on for over a month with reoccurring vomiting and low grade fevers, he has also had a history of joint pain and different kinds of rashes.

    His ANA results came back as
    1:320 speckled &
    160 anti centromere

    I understand the speckled one, but am at a loss regarding the anti centromere - what it means and also what that number means - high or low or whatever.

    Reading the internet (bad I know) it seems to show a strong connection with scleroderma - but his symptoms don't really seem to match.

    I was wondering if that test can be positive in healthy people, I know the speckled ANA can - but at those levels only about 3% of the population who have it don't have an autoimmune disease.

    This is all so confusing. Any help would be greatly appreciated.

     
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    Old 01-30-2015, 10:46 PM   #2
    beebs77
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    Re: 5 year old health issues positive ANA

    Thought I should mention, I have autoimmune diseases, as does his paternal and maternal grandmothers.

     
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    Old 02-01-2015, 06:03 AM   #3
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    Re: 5 year old health issues positive ANA

    First, I want to say that I'm so sorry to read that you have such worries about your little guy. Re his autoantibody tests so far, I don't think that any of the AI's are diagnosed *solely* on the basis of antibody tests. Each of the major ones (Lupus, Sjogren's, Rheumatoid Arthritis, Scleroderma, etc.) has its own set of diagnostic criteria. These lists are layered and nuanced; and further, antibody tests (ANA plus its subtypes) only account for a certain percent of each list.

    If you were to read the criteria for scleroderma, you'd see that anticentromere is a criterion, but what isn't clear (to me) is what level is considered "positive enough" to even be counted, i.e., you'd have to know how significant 160 is. Also, I believe anti-centromere can occur in other conditions as well, like lupus (SLE), Sjogren's, and maybe even some others (not sure, sorry).

    Today ANA pattern is still most often assigned by a lab tech, I believe. (Others here may know more than I on this point.) If it was lab-assigned, you'd have to view it as a judgment call rather than a "hard finding". And similar to ANA level, ANA pattern alone is never diagnostic of anything. Instead, the various criteria I mentioned above always trump.

    Also worth pondering: within the broad scleroderma family, there are some limited, milder versions that fall far short of full-blown systemic sclerosis, like CREST syndrome and Mixed Connective Tissue Disease (MCTD). And there may be even more of these lesser variants (I don't know, sorry).

    In your post, one thing really stood out to me: his rashes. Can you describe them: what they look like; where they appear; whether they itch, burn, scar, depigment, etc.? Offhand, I believe there are upwards of 12-15 unique rashes possible in lupus; and for those, you'd expect sun exposure to either trigger or exacerbate them. However, other AIs besides lupus can also cause rashes, too, like Celiac disease, for one. And of course prescription meds are a culprit for many people. Has he taken any meds lately?

    Although many of the AI's can affect children, I believe the most common cause of joint pain in young children is JRA (Juvenile Rheumatoid Arthritis). I think JRA is a diagnosis of exclusion, meaning doctors must rule out all sorts of other "biggies". Anyhow... I hope something above helps a bit & that others add more thoughts. Looking forward to hearing more & sending your son and you my best wishes, sincerely, Vee

     
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    Old 02-01-2015, 09:44 AM   #4
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    Re: 5 year old health issues positive ANA

    Hello, and I too am sorry you are dealing with anxieties over your sick little guy. Vee covered everything quite well, so my only input is that the number 160 on centromere antibody result is probably the titer of 1:160. With his level of ANA and ACA being positive at clinically significant levels, he really needs evaluation by a pediatric rheumatologist, who will undoubtedly take his symptoms and lab results seriously and strive to get some answers for you both. I would try to get a referral to the best ped rheumatologist in your area, so your little guy gets the most information and help with a minimum of venipunctures for a diagnosis. Please keep us posted on his progress, and you'll be in our thoughts!

     
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    Old 02-01-2015, 04:02 PM   #5
    beebs77
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    Re: 5 year old health issues positive ANA

    Thank you so much for your replies!

    Coeliac would be one of the things I would think of first (I have it as does his grandmother), but he is negative on both the panels and genes. I know that he can still have it, but it is very rare to be genes neg and have it.

    Re the rashes there are two different main ones, and as far as I can work out neither sound very like lupus rashes.

    One is small bump like things on his trunks and legs, the doctor was not concerned at all. The other is the newer one, and are red patches of scaly, not itchy none painful rashes. On his back and thighs. Two GPS have said not to worry, its just dermatitis.

    It just seems strange that all of a sudden these things have all started popping up together you know?

    The joint pain has been going on for awhile, but all this other stuff is new. He has had allergy tests before that were all negative.

    He is still getting low grade fevers that come and go etc. We are most likely going to be referred to our children's hospital and the wait time will be likely 6-9 months. Crazy!

     
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    Old 02-01-2015, 04:14 PM   #6
    beebs77
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    Re: 5 year old health issues positive ANA

    Oh, and he has had no meds of any kind. The rashes came up about 2 or 3 months ago. And the scaly ones keep moving around his legs and back.

     
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    Old 02-02-2015, 06:21 AM   #7
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    Re: 5 year old health issues positive ANA

    Beebs, it's the height of summer where you reside, right? Are his rashes on photo-exposed skin only? Does sun trigger or exacerbate them?

    Reason I ask is that years ago, in my wisdom , I knew of only TWO kinds of lupus rashes, the malar facial butterfly kind and the discoid scarring kind. I didn't know that there are OTHER kinds as well, ones that can appear all over the body. My rash turned out to be SCLE (subacute cutaneous lupus erythematosus), the annular (targetlike) form. For 4 years, they'd appear as red raised bumps, like mosquito bites, but non-itchy. Then in subsequent episodes, those same red bumps appeared & then expanded into perfect red-rimmed circles with clear centers; then expanded further, losing circularity, then faded without scarring or depigmenting.

    And there's a second kind of SCLE rash called SCLE psoriasiform or papulosquamous. It resembles psoriasis.

    In people who get either form of SCLE rash, the anti-Ro autoantibody is commonly found. (Anti-Ro is also found in people with Sjogren's syndrome.)

    I only share all that to illustrate that there are lupus rashes that are neither malar (butterfly on face) nor discoid (the kind that scars). Those two are "classic", so most doctors would recognize them, but maybe not the other kinds! FYI, the lupus board has info on all the rashes, their proper names & a little bit about what they look & feel like.

    I think there are some other skin conditions that are photo-induced, like PMLE (polymorphous light eruption) for example.

    Another thought: did his doctors comment on whether his scaly patches in any way resemble psoriasis? (But I've always believed that psoriasis tends to itch, though, and you said his patches don't itch?) There's a condition called Psoriatic Arthritis that features joint pain and psoriasis.

    Like you say, that these two issues---rashes & joint pain---are coinciding would make me wonder, too, so I think you'd have to at least consider the possibility that they're connected. Bye for now, Vee

     
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    Old 02-02-2015, 01:12 PM   #8
    beebs77
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    Re: 5 year old health issues positive ANA

    Yes, you are right - the height of summer here. The rashes are in areas that get the sun, and areas that are covered up. Rashes confuse me greatly!

    Interesting that your rashes didn't look classic for so long and then eventually turned that way. There is so much we don't know about AI disease it is frightening.

    I have psoriasis in my fingernails, that may be an answer to my unspecified connective tissue disease, although at this rate I am sure I will never know.

    Thanks for all you help, I appreciate it.

     
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    Old 02-02-2015, 01:25 PM   #9
    beebs77
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    Re: 5 year old health issues positive ANA

    Yes, you are right - the height of summer here. The rashes are in areas that get the sun, and areas that are covered up. Rashes confuse me greatly!

    Interesting that your rashes didn't look classic for so long and then eventually turned that way. There is so much we don't know about AI disease it is frightening.

    I have psoriasis in my fingernails, that may be an answer to my unspecified connective tissue disease, although at this rate I am sure I will never know.

    Thanks for all you help, I appreciate it.

     
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    Old 02-02-2015, 03:54 PM   #10
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    Re: 5 year old health issues positive ANA

    Beebs, by "classic" I meant that I sense that only two of the lupus rashes are so well-known that most doctors, including GP's, recognize them. It's all those others, the rarer ones, that befuddle, I suspect. I must have seen at least 8 suburban dermatologists and not one of them even suspected my rash was lupus-related. They'd simply never seen it. In marked contrast, my new rheumatologist, who's affiliated with a large teaching hospital, needed about one second. I then went to a dermatopathologist (that's a dermatologist + pathologist) for my 3rd & final deep-punch biopsy, for proper confirmation.

    I've gotten rashes thru clothing, so I'm pretty sure it's possible.

    Do you see a dermatologist for your psoriatic nails? If you do, has he/she seen your boy's rashes? In my experience, GP's just aren't that good at rashes, but really, why would they be? I think there are more than 16,000 skin conditions! Please let us know what happens next. All my best.

     
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    Old 02-02-2015, 04:38 PM   #11
    beebs77
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    Re: 5 year old health issues positive ANA

    I've only seen my rheumatologist for my nails, for years doctors were trying to treat fungal nail with no success and like you, the moment she saw my nails she knew straight away it was psoriasis. Might try and get him into a dermatologist.

     
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    Old 02-03-2015, 07:18 AM   #12
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    Re: 5 year old health issues positive ANA

    There are 3 main types of systemic scleroderma: The CREST or limited systemic variety - the "limited" bit refers only to where on the skin the hardening of scleroderma occurs. Diffuse systemic scleroderma and again, the "diffuse" bit refers to where the skin involvemnt is. And finally there is sine systemic and the "sine" bit refers to the fact that there seems to be very little to no skin involvement. There are several non systemic forms of scleroderma such as morphea and en coup de sabre. Relatives of people with autoimmune diseases often have higher ANA titres with no disease than others. Secondly, the anticentromere is often confused with speckled and if there is a suspicion of limited sclero, an antibody test should be run for the anticentromere antibodies. I am sorry to hear your little guy is not feeling well! The skin rashes associated with scleroderma don't move around, if that's any help. Once a patch appears, even if the skin subsequently softens, it always remains, so if a rash disappears, it is probably not associated with scleroderma. I do not know if 1:160 is significant in children. I know that my rheumatologist would not consider it significant in adult with a relative with AI disease, especially on the basis of one test. The AI panel should be run again six weeks after the initial panel to see if any changes have taken place and move on from there. I know it takes way to long to get these things sorted out, especially when it concerns our kids! I think you are right to take your little guy to a dermatologist as a start, to get his rashes identified and if needed treated. Best wishes for you and your little guy.

     
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    Old 02-03-2015, 08:01 AM   #13
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    Re: 5 year old health issues positive ANA

    It may be a good idea for the rashes to be biopsies while waiting for Children's hospital consult. I would stress to Children's scheduling people that he has fever of undetermined origin (FUO) which may get them to move appointment sooner. It is unreasonable for him to have to wait that long. The biopsies should include immunofluorescent studies to look for a lupus band, a layer of immune deposits between the skin layers. This is VERY important or the biopsies may come back inconclusive.

     
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