High ANA and RF+ in a 6 year old child

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wormiemb
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Date Joined Dec 2010
Total Posts : 2
   Posted 12/28/2010 1:51 PM (GMT -6)   
Hi, My 6 year old daughter recently had some BW drawn bc of leg pain she was experiencing. Her labs came back normal exept for rheumatoid factor positive and ANA >1:640. She does not have any swollen joints or visible arthritis issues. I have 2 aunts with Lupus and am concerned that this is what we are looking at. We see a pediatric rheumatologist in a few days but I am very stressed about this. In the last few weeks she has lost some control of her bladder and now complains of blurry vision. Any advice for a worried mother?

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 12/28/2010 3:58 PM (GMT -6)   
When I was four years old I had similar blood results but with the swollen joints and pain. I recovered and now as an adult my ANA is normal. I had a normal healthy childhood, when I was eight I lost control of my bladder but it turned out to be a bladder infection.

I pray she comes out of this fine to have a normal happy childhood. Try not to stress, I know easier said then done. I hope the rheumatologist appointment goes well and you are able to get some answers.

I've never been diagnosed with lupus, autoimmune diseases run in my family too, and I am pretty healthy, no life threatening issues although I do have some autoimmune issues.

I hope this helps a little. These blood results do not mean your daughter will have serious problems. And again I hope the rheumatologist appointment goes well.

mechiko
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/3/2011 2:38 PM (GMT -6)   
If she is complaining of blurry vision, you need to take her to an opthamologist ASAP. Iritis/uveitis are very common with lupus and some other autoimmune diseases, and can cause permanent damage to vision if not treated! They will most likely prescribe steroid eye drops to bring down inflammation.
I struggled for a year to get my uveitis under control - they told me if it did not get under control, I would gradually lose vision until I was blind.
Please take her in!!

Kathryn

wormiemb
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Date Joined Dec 2010
Total Posts : 2
   Posted 1/3/2011 3:55 PM (GMT -6)   
She has an apt with an Opthamologist but not until 2-16-11 as that is the soonest they could see her. We had our first apt with a pediatric nephrologist who also does some rheumatology and it was horrible. He came in, looked at her BW then at her and he said "She does not look like her labs say she should, we will just see her again in 2-3 mths!" I was appalled! He didnt even go over family history or even give her a look over! When i said i was concerned with our family history, he said he would run the tests for lupus but that he wasnt concerned. When i asked him about the new pink/red rash on her cheeks and nose, he said he sees it and saw it when she came in but still wasnt concerned. Are you serious? I was very surprised. Needless to say, I am requesting a new referral to an out of town pediatric rheumatologist as there are none here. Any thoughts?

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 1/3/2011 5:15 PM (GMT -6)   
Sorry to say it sounds very familiar. If that's his attitude then a second opinion is a good idea. But he did schedule a follow up so that could mean he wants to keep an eye on her condition. But I recently had a hematologist say I was as healthy as a horse and treat me like a hypochondriac and then schedule a follow up? He was a jerk.

I would also want a new referral but you could still take her to the follow up unless he was just way too rude. Sometimes the treatment is as bad or worse than the symptoms as you probably know so having a doctor follow her condition is a good idea but I don't blame you for wanting one who shows some concern for your daughter. Maybe you should keep a journal on all the things you are seeing, such as symptoms and things she says.

bkp63
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Date Joined Apr 2011
Total Posts : 1
   Posted 4/7/2011 2:02 AM (GMT -6)   
Have her seen by a lyme literate doctor. Make sure the doctor specializes in lyme disease. Lyme mimics autoimmune diseases such as lupus or it can induce autoimmune-like symptoms. Have your other autoimmune diagnosed family members seen by a lyme specialist. Do not settle for the standard CDC lyme tests, even they tell you this test fails to show lyme 80 to 90% of the time. Find a lyme doc via http://www.lymenet.org/SupportGroups/ click on link and scroll down and choose your country then your location. The support groups can help you with locating a lyme specialist in your area.

Borrelia Burgdorferi(Bb) tends to infect the B-lymphocytes and other components of the immune system which are responsible for creating the antibodies, which are then measured by an ELISA test or Western Blot test. Since antibody production is greatly compromised in infected individuals, it makes no sense to use these tests as the gold standard or benchmark for the presence of Bb. We also are aware that in endemic areas in the US up to 22% of stinging flies and mosquitoes (2, 8, 9,10) are carriers of Bb and co-infections.. In South East Germany and Eastern Europe, 12 % of mosquitoes have been shown to be infected. Also many spiders, flees, lice and other stinging insects carry spirochetes and co-infections.

A negative Western Blot does not and cannot prove the absence of the infection. Having taken another route altogether, we have recognized the following: Today many if not most Americans are carriers of the infection. Most infected people are symptomatic, but the severity and type of the symptoms varies greatly. The microbes often invade tissues that had been injured: your chronic neck pain or sciatica really may be a Bb infection. The same may be true for your chronic TMJ problem, your adrenal fatigue, your thyroid dysfunction, your GERD and many other seemingly unrelated symptoms.

Make sure your Lyme labs that you had done check for bands 31 and 34. The CDC prohibits labs from reading bands 31 and 34 on the Lyme IgM and IgG Western Blot tests. The reason for this is because at one time they were working on a vaccine for Lyme. Anyone inoculated with the Lymerix vaccine would come up positive on bands 31 and 34 becuase those bands were SPECIFIC to borrelia burgdorferi. The Lymerix vaccine was discontinued because it was killing people. But, despite pulling the vaccine from the market, the CDC never re-established the reading of bands 31 and 34 to the test. These two bands are specific to the borrelia bacteria and do not cross reference with any other bacteria.

The ILADS (International Lyme and Associated Diseases Society) has established its own criteria for reading the Lyme WB tests. Their criteria requires that bands 31 and 34 be read which greatly increases the accuracy and validity of the tests. Igenex Labs in California is a good lab. If you didn't have your Lyme tests from this lab, or a lab where bands 31 and 34 were NOT read on your Western Blot tests.....you should be re-tested by a lab that does.

tfofd
Regular Member


Date Joined Apr 2011
Total Posts : 56
   Posted 4/7/2011 4:14 PM (GMT -6)   
Has she been tested for diabetes? She's so little to have these problems. You know you can have autoimmune disease without apparent joint problems or swelling, it can cause muscle pain too. Alot of us have symptoms that are not apparent on the outside, we just feel them, that's why people have a tendency to think it's all in your head, because you look okay.
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