View Full Version : New here and this is long but hope you can help.

07-01-2004, 10:37 AM

My daugther is 9 (10 at the end of july). Since April 2003 she has had a steady progression of many symptoms. It started with swollen lymph nodes and I took her to the doctor. The only flag in her blood work was a Low Mean Platelet Value (6.9) and High MO 10.7.
After that she just started to have bouts of fatigue and her eating habits began to change. Plus she got a very scaly type rash at her ankles which the doctor said was eczema.
Fast forward to November she woke up one morning screaming in pain, very high fever, extreme pain in her left side, all joints hurting just really sick. Doctor said Mono with secondary sinus infection. She was sleeping 17-20 hours a day and not eating. Got better, relapsed, and that pattern continued off and on throughout March. We have had 4 or 5 negative mono test. She still has bouts of fatigue and runs out of energy easily, doesn't seem to be "herself" and her appetite waxes and wanes. She complains of her stomach hurting and sometimes has difficulty swallowing.
There is a rash on her face that is sometimes faint and sometimes darker.
Yesterday she had hip pain and we went back to the doctor. He looked at her last blood work and said her ANA level was 1.80 and was flagged boderline so he is sending us to a Pediatric Rheumatologist...

What should we expect at this visit? What info do we need to arm ourselves with? Does this sound like Lupus?

I guess I would just like to hear from someone who has been in our shoes.

07-02-2004, 12:00 AM
Hi bbsmom,
Saysuzie should be here pretty quick to help you out.

07-02-2004, 08:38 AM
Sorry to hear of your troubles. I know how frustrating it was for me to not know what was wrong before I was diagnosed, so I can only imagine what it's like with a child. I have not been to a Pediatric Rheumatologist (that's great you even have one in your area), but my experience with Rheumatologists in general has been very positive. The hard thing about these diseases is that there is no one test that says "You have Lupus", so do expect more bloodwork and possibly more waiting. It might be nice to ask your Pediatrician to ask the Rheumatologist to order bloodwork they want BEFORE your appointment, so that there is more info to deal with. My experience has been that the Rheumatologist always has additional bloodwork they want that your family doctor might not be aware of. This might help speed up the process.

The waiting is the worst - once you know what you're dealing with, it's easier to move on, fight it, accept it. I will be thinking of you.


07-02-2004, 02:17 PM
Thanks Missy for the supportive note. I got the call yesterday and our Rheumatologist appointment is on July 15th (only 13 days of being in "limbo"). That seems incredibly quick considering the doctor said it would probably take 6 or 8 weeks to get an appointment. It will take us 2 hours to get to him because we don't have one in our city but I don't care if we have to drive to Timbuktu.. :D

When someone has lupus are they run down all the time for the rest of their lives? Some days she seems just like her old self very energetic but she tends to run out of steam a lot faster than she used to.
For example she used to dance for hours and hours (ballet/jazz) she took classes but even at home she just danced for hours. Now on what I call energetic days she just sort of putters out after a few minutes. The same with playing her drums 10 or 15 minutes and kaput she's done.

At our last appointment with our family doc. On this past Wednesday he ordered labwork, ANA and 2nd tier ANA. I am not sure what the 2nd Tier thing is do you know? Should I request a copy of those test to take with us to the Rhematologist? I don't even know how long it will take them to get the results back. Everything seemed to happen so fast when we were there I just forgot to ask.

What does an ANA level of 1:80 mean? Is there a "normal" range? Is the range different for children than for adults? All the info I find on the web is so repetitive and not really as informative as I would like...

Also are headaches common with Lupus? She keeps complaining of a headache in the back of her head...

I sure wish I had one wish so I could take away everyones LUPUS,


07-06-2004, 06:32 PM
So glad to hear that your Rheumatologist appt is soon. That will be nice for your family to hopefully get some answers. I don't think you can say that someone who has Lupus is always run down for the rest of their life. SLE seems to affect all of us differently, as do the medications to treat it. I feel like my fatigue issues initially were due mostly to anemia (I was bleeding from my kidneys) and now are really just due to the side effects of all the meds I am currently on. I have good days and bad days, and that can go along with my mental outlook also! I hear the same from others. I feel like I can do almost anything anyone else can, but I might not do it for as long.

There are a lot of different indicators for active disease in Lupus, so you will learn lots of new words at your Rheumatologist visit. I know Saysusie has some other posts explaining in detail the ANA ratios, etc. When I started, I brought a notebook of questions to my appointments. They will probably order C - Complements and maybe anti-double stranded DNA tests also, which is why I suggested your family doc ask the Rheumy what he wanterd ordered before your appointment. The ANA is kind of a basic one, in my understanding. It's a ratio thing, and I don't know if I can explain it right, but it "kind of" can indicate active disease. For example, I had a "positive ANA" for years before I had any symptoms, and my Aunt has a negative ANA, but is diagnosed with Rheumatoid Arthritis and Raynaud's and has all the chronic joint pain, fatigue, etc. One thing I've had to explain to my friend and family is that these tests for Rheumatological diseases are not like a biopsy for a tumor (malignant or benign), but rather a set of indicators that help lead us to conclusions. At least that's the way I look at it.

Please post after your appt, so we know how it went!

Thinking of your family,


07-07-2004, 03:10 AM
Only 7 more days until we go to the Rheum. I am counting down the days!!

Today I am picking up copies of the ANA labwork done last Wednesday to take with us to the Rheum.

I will post again when we know something.

Thanks for all the input its been very helpful!!


07-12-2004, 12:20 PM
Hi bbsmom: Welcome to our forum!
How was your appointment? You asked about ANA tests and their results - I thought I would provide you with this information concerning the test so that you can be a bit more informed when you take the copy of the results to your doctors (and/or just for your own peace of mind!): This information is from the Lupus Foundation of America.
The immunofluorescent antinuclear antibody (ANA or FANA) test is more specific for lupus but it is not a diagnosits test which says yes or no to a diagnosis of Lupus by iteself! The ANA test is positive in virtually all people with systemic lupus. If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms. If the ANA test result comes back above the normal range the test is said to be positive. A positive ANA test by itself is not proof of lupus. The ANA is only a test and like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease. The ANA test may also be positive in individuals:
with other connective tissue diseases; without symptoms; being treated with certain drugs, including procainamide, hydralazine, isoniazid, and chlorpromazine; with conditions other than lupus, such as scleroderma, rheumatoid arthritis, infectious mononucleosis and other chronic infectious diseases such as lepromatous leprosy, subacute bacterial endocarditis, malaria, etc., and liver disease.

Because it can be positive in conditions other than lupus, the results of the ANA test have to be interpreted in light of your daughter's medical history, as well as the current clinical signs and symptoms.
ANA test reports include a titer (or strength) of the antibody. The titer indicates how many times an individual's blood must be diluted to get a sample free of anti-nuclear antibodies. Thus, a titer of 1:640 shows a greater concentration of anti-nuclear antibodies than a titer of 1:320 or 1:160. A high titer of this antibody (greater than 1:1280) is usually associated with rheumatic disease but has nothing to do with how active a person's lupus is. Therefore, it is not necessary to repeat the ANA in someone who has lupus. Other blood tests (complement factors C3 and C4, anti-DNA, the complete blood count, and urinalysis) are the best laboratory index of lupus activity.
Complement is a blood protein that, with antibodies, destroys bacteria. It is an "amplifier" of immune function. If the total blood complement level is low, or the C3 or C4 complement values are low, and the person also has a positive ANA, some weight is added to the diagnosis of lupus. Low C3 and C4 complement levels in individuals with positive ANA test results may also be indicative of lupus kidney disease.
Tests of individual antigen antibody reactions have been developed which are very helpful in the diagnosis of SLE. These include the anti-DNA antibody test, the anti-Sm antibody test, the anti-RNP antibody test, the anti-Ro antibody test, and tests which measure serum complement levels. These tests can be further explained by your physician.
Detection of antibodies to phospholipid, such as the anticardiolipin assay or a positive lupus anticoagulant can be cause for concern especially if the patient has evidence of blood clots (thromboses). The most common manifestation of this is phlebitis or inflammation of the vessels in the calves of the legs. Presence of these antibodies in the absence of any abnormal clotting may require simple aspirin therapy to mildly thin the blood. However, evidence of abnormal blood clotting may require that the patient take a blood thinner like heparin and later warfarin to prevent blockage of small and large blood vessels. When blockage occurs in the lung or the brain it can be very serious.
Laboratory tests are most useful when one remembers the following information.
If an individual has signs and symptoms supporting the diagnosis of lupus (e.g., at least four of the American College of Rheumatology criteria), including a positive ANA, the diagnosis is confirmed and no further testing is necessary.
If a person has only two or three of the ACR criteria, including a positive ANA, then the ANA supports but does not confirm the diagnosis. In these cases, unless more specific tests are positive (e.g., anti-DNA, anti-Sm, anti-Ro) the diagnosis of lupus is uncertain until more clinical findings develop or other more specific blood tests, as cited above, become positive.

Many patients may present with vague symptoms and only a positive antiphospholipid (APL) antibody or a lupus anticoagulant. A person may only have positive antiphospholipid antibodies and be diagnosed with primary antiphospholipid syndromeinstead of lupus. People with primary APL syndrome might still have problems with premature clotting of blood and require treatment.
Physicians will sometimes also perform skin biopsies of both the individual's rashes and his or her normal skin. These biopsies can help diagnose systemic lupus in about 75 percent of patients.
A kidney biopsy is sometimes required if urine or blood evaluations show evidence of kidney disease. Kidney abnormalities vary with each patient. A biopsy and special preparation of the biopsy sample is required to give the doctor an idea of the degree and type of kidney injury. Using the biopsy results the doctor can tailor therapy for each individual.
The interpretation of all these positive or negative tests, and their relationship to symptoms, is frequently difficult. A test may be positive one time and negative another time, reflecting the relative activity of the disease or other variables. When questions cannot be resolved, consult an expert in lupus.
When someone has many symptoms and signs of lupus and has positive tests for lupus, physicians have little problem making a correct diagnosis and initiating treatment. However, a more common problem occurs when an individual has vague, seemingly unrelated symptoms of achy joints, fever, fatigue, or pains. Some doctors may think the person is neurotic. Others may try different drugs in the hope of suppressing the symptoms. Fortunately, with growing awareness of lupus, an increasing number of physicians will consider the possibility of lupus in the diagnosis.
A patient can help the doctor by being open and honest. A healthy dialogue between the patient and doctor results in better medical care, not only for people with lupus, but for anyone seeking medical treatment.
To whom should a person go for a diagnosis of lupus? Most individuals usually seek the help of their family doctor first, and this is often sufficient. However, when unresolved questions arise or complications develop, another opinion from a specialist may be advisable. The choice of specialist depends on the problem. For example, you would see a nephrologist for a kidney problem or a dermatologist for a skin problem. Most often, a rheumatologist or clinical immunologist specializing in lupus is recommended. Referrals can be made through your family doctor, the local medical society, or the local Lupus Foundation of America chapter.
Try to be as informed as you can about Lupus, its symptoms, its treatments and its medications. This is the best way for you to support and to help your daughter.
Let us know if you need any other information or if we can help you in any way!
Please stay in touch!!
Peace and Blessings

07-20-2004, 07:38 PM
Please give us an update as to how the appointment went and how things are with your daughter. I've been thinking of your family....


07-21-2004, 08:57 AM
Hi Missy,

Thanks so much for checking in. I really appreciate it.

I've been meaning to come up and post but haven't had the chance. The Rheumatologist called last week and rescheduled us for the 22nd (tomorrow) and said to bring entire medical history. I have been running around like a mad woman to all of the doctors (gastro, pediatrician, new family doctor) trying to collect them all. But its been worth it because I didn't realize how many times we've been complaining of the same symptoms over and over again!!!


Thanks for all of the information..

I will post tomorrow night when we get back (we have to go to another city to see the doctor). Keep fingers crossed for good news.

Tara :D

08-02-2004, 01:44 PM
I was reading about your daughter and my prayers are with you all.

I did not see any new postings and hope that all is ok.

Good luck and be well,