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12-year-old w/+ ANA Choice, titre >1:1280 and speckled

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Old 05-23-2009, 10:50 PM   #1
Join Date: May 2009
Location: NC
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NCNative007 HB User
12-year-old w/+ ANA Choice, titre >1:1280 and speckled

My daughter's blood work just came back and the ANA choice was +, ANA titre >1:1280 and speckled. Her sed rate was normal. Her rheumatiod factor was normal and her complement C's were normal, as was her CBC. (Sorry if I messed up some of the names but I was writing quickly and abbreviated the the test names that were normal.) She has what we call the "mystery" rash that always appears just before she becomes ill. (Had it since she was 2.) She has a hx of multiple fractures w/prolonged healing time. Hx of joint pain and swelling (w/o fracture), as well as asthma and chronic hives.

When the pediatrician got the results, she called and left a msg stating the results were "interesting" and she was sending us to a pediatric rhuematologist. We have an appt in a few weeks. I looked up the ANA tests and what the results might mean. And, I'm scared to death for my daughter. If all of her other blood work was normal, wouldn't that help rule out lupus?

I'm going crazy. The pediatrician said she doesn't want to discuss the possibilities and that she is leaving it to the rhuematologist. I think that's harsh. Also, my daughter is supposed to have knee surgery in a couple of weeks. Would a positive ANA effect her ability to heal after surgery? Her orthopaedic said that she still needs the surgery and would recommend going ahead.

How worried should I be? Thanks for any info.

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Old 05-24-2009, 08:49 AM   #2
Angel MJ
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Re: 12-year-old w/+ ANA Choice, titre >1:1280 and speckled

you are a mom and telling you 'how much' to worry when i am not a mom seems ... inconsequential ... you're going to worry anyway! so all i can say is *take a breath* ...
your doc seems to be getting on the ball and possibly doesn't want to 'scare' you but they don't realize that too little info is far more dangerous that enough to let us make informed decisions.
if she has been experiencing a host of issues for 10 years ... the possibility of a dx might be a relief ***big hug*** gives you treatment options etc!
i was undx until 27 and have a medical history that is scary (mystery illnesses, rare for a female etc) but point is i think if they had got the dx earlier then i would have 'learned' by now how to live 'a normal life with lupus' + would have known sooner what to watch for etc ... kids are resilient and cope easier than adults sometimes ...

ps:i think the positive ANA is usually indicative of disease activity(SLE, DLE etc) can be lower or negative in times of remission. The other *normal/negatives* are a good thing i think means no organ involvement ... small mercy!
bloodwork is only a part of the dx criteria ... and is possible to change.

All my strength & hugs to you & your daughter!
good luck with the rheumie! Remember to ask your questions, and don't let up until you are happy with the answers (can understand etc)
do you have a family member that can go with you to the appt? ... in my case i take hubby everywhere so if i get emotional he can step in and get the answers for me - we hear differently (men mars women venus thing?) so the discussions following the visits are also interesting

Last edited by Angel MJ; 05-24-2009 at 09:04 AM.

Old 05-24-2009, 10:35 AM   #3
Join Date: May 2009
Location: NC
Posts: 2
NCNative007 HB User
Re: 12-year-old w/+ ANA Choice, titre >1:1280 and speckled

Hi. Thanks for the reply. I am worried--worried sick that's why I was up at 2in the morning trying to read up on what these results mean. I was hoping that since all of her other bloodwork was within normal ranges, that maybe this ANA result was just a fluke.

It's too bad that we cannot get answers as quickly as we want them
My husband is going to the rhuematologist appt w/us. I've written down a list of questions that I have. I'm know we won't get all of the questions answered in one visit but I'm hoping to have a few of them answered.
Thanks again.

Old 05-24-2009, 10:50 AM   #4
Angel MJ
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Re: 12-year-old w/+ ANA Choice, titre >1:1280 and speckled

i am sure that you will receive some further insight soon - time zone differences often cause delayed responses ... just remeber to keep breathing!

if lupus is the culprit ... then there are options, treatments, warning signs, things to avoid etc, BUT please remember there are a lot of lupians living quite normal lives ...
being on here and getting info (maybe a little info overload at the moment) you will always see a similar trait - the fight in all of us! and the wonderful family here helps everyone thru the roughest and best of patches!
another ***hug***
ps: your doctor should be able to answer all your questions! see if you can chat via e-mail ... sometimes find it easier to read than hear the answers ... also if i forget something at the appt. and instead of waiting for 2 months i can send my question or concern.

sorry - just re-read your post and wanted to add : please look after yourself!
your daughter is going to look to you in how to handle the dx ... it may be worth seeking counseling, could really help you all going thru this process (???)

Last edited by Angel MJ; 05-24-2009 at 11:00 AM.

Old 05-24-2009, 02:25 PM   #5
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Re: 12-year-old w/+ ANA Choice, titre >1:1280 and speckled

NCNative007, hello. WELCOME to you & to your daughter. I'm only a patient (obviously); but because I was "rashy" & had problems from childhood, I'm curious what your daughter's rashes look like, where on her body they appear, if they itch, if they scar and/or depigment, if they change shape, how long they last, if you've noticed any correlation to sun exposure, etc.

I learned, after many dermies, that rashes can be identified as "lupus-specific" by deep-punch biopsy with immunofluorescent stain tests, done by a dermatologist or dermatopathologist. In these tests, a lupus-specific rash will present a UNIQUE appearance, which can confirm a Dx of lupus. However, skin biopsy results don't convey the *extent* of the disease, i.e., whether it's systemic lupus (SLE), the intermediate form called subacute cutaneous (SCLE), "skin-only" discoid (DLE), or drug-induced (DILE). But these skin tests can be helpful in proving that lupus exists, to some extent.

Unfortunately, not all people with lupus get "lupus-specific" rashes. Some people with lupus are also prone to skin problems like hives, etc., meaning to rashes that aren't "lupus-specific" and wouldn't test as such.

About ANA vs. other bloodwork tests: Many drs. call for an ANA test, get results, and only then order more specific autoantibody tests. ANA is actually only a threshold test: it doesn't prove lupus, because it's positive in multiple diseases, e.g., lupus, Sjogren's, rheumatoid arthritis, polymyositis, dermatomyositis, etc. But if lupus is a possibility, drs. tend to order certain more specific tests, e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, anticardiolipin, ETC. There are 16 or more additional specific tests that drs. tend to go for when lupus is a candidate.

To read more: most libraries and large bookstores have lupus hardcovers, written for patients. One good author is Dr. Daniel Wallace, and another is Dr. Robert Lahita.

I don't have the nerve to say DON'T WORRY, as I couldn't help but worry if I were in your shoes. But if your daughter's basic bloodwork & urinalysis are normal, one would hope those are good signs? You could just ask her dr. point-blank.

It's possible to have lupus but remain "subacute", meaning major organs like brain, kidneys, heart, lungs, etc. are NOT affected. My point is that even in lupus, you can feel absolutely crummy (for lack of a better word), but have lesser things like pain, fatigue, rashes, anemia, etc. And people who DO have major organ involvement?---today there's better help available than ever before. Main goals are proper treatment & ongoing followups.

I hope this something useful. My heart goes out, as I know you're worried, but please don't assume the worst. I hope you learn more & get concrete answers soon. Post more when you have time, OK? My best wishes to you both, Vee

Last edited by VeeJ; 05-24-2009 at 02:39 PM. Reason: corrections

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