Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
So she has an appt with her doctor Monday afternoon for a full bloodwork up and some other testing.
I know her grandmother has discoid lupus, and auto immune disorders run rampant on both sides of the family.
She has these funny looking spots that run from her upper back, to now past her buttocks and they have started showing up on her upper thighs. We thought at first it was acne, but nothing acne med wise we have tried is working. She has been complaining for a couple of months now of her stomach hurting (which I stupidly chalked up to her trying to get out of going to school) and her hips and knees hurting and of muscle pain. She's also been getting headaches and here lately (past month or so) she's been so tired when coming in from school, she just goes right to bed and sleeps most of the day away, she feels a little better when she gets up, but not very much. Before this when she would come home she would get right on the computer to talk to her school friends and to use her paint program to draw, as that is something she is passionate about, and for her to come home and not even want to draw is so out of the ordinary.
She has Asperger's which puts an even greater twist to this. I'm hoping that she doesn't have lupus, as like I said her grandmother has lupus and it has not been a pretty sight, and it breaks my heart for each and every one of you who do have lupus.
Is there anyone out there who have children with this or anyone who had to go through this as a child and do you have any advice for me as to what to make sure to ask the doctor's or what to look for? Thanks in advance for any advice or insight you can provide.
I know her grandmother has discoid lupus, and auto immune disorders run rampant on both sides of the family.
She has these funny looking spots that run from her upper back, to now past her buttocks and they have started showing up on her upper thighs. We thought at first it was acne, but nothing acne med wise we have tried is working. She has been complaining for a couple of months now of her stomach hurting (which I stupidly chalked up to her trying to get out of going to school) and her hips and knees hurting and of muscle pain. She's also been getting headaches and here lately (past month or so) she's been so tired when coming in from school, she just goes right to bed and sleeps most of the day away, she feels a little better when she gets up, but not very much. Before this when she would come home she would get right on the computer to talk to her school friends and to use her paint program to draw, as that is something she is passionate about, and for her to come home and not even want to draw is so out of the ordinary.
She has Asperger's which puts an even greater twist to this. I'm hoping that she doesn't have lupus, as like I said her grandmother has lupus and it has not been a pretty sight, and it breaks my heart for each and every one of you who do have lupus.
Is there anyone out there who have children with this or anyone who had to go through this as a child and do you have any advice for me as to what to make sure to ask the doctor's or what to look for? Thanks in advance for any advice or insight you can provide.
Symptoms
By Mayo Clinic staff
Photograph showing red, butterfly-shaped rash on nose and cheeks Lupus facial rash
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes called flares when signs
and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:
Fatigue
Fever
Weight loss or gain
Joint pain, stiffness and swelling
Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
Skin lesions that appear or worsen with sun exposure
Mouth sores
Hair loss (alopecia)
Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
Shortness of breath
Chest pain
Dry eyes
Easy bruising
Anxiety
Depression
Memory loss
When to see a doctor
If you develop an unexplained rash, ongoing fever, persistent aching or fatigue, see your doctor.
If you've already been diagnosed with lupus, meet with your doctor on a regular basis so that your condition and treatment can be monitored. Make an appointment with your doctor if new symptoms arise.
Preparing for your appointment
By Mayo Clinic staff
You're likely to start by seeing your family doctor or primary care provider. Because the symptoms of lupus can mimic so many other health problems, you may need patience while waiting for a diagnosis. Your doctor must rule out a number of other illnesses before diagnosing lupus.
Here's some information to help you prepare for your first appointment, and what to expect from your doctor.
What you can do
Write down your symptoms, including when you first noticed them and how often they occur.
Write down key personal information, including any recent changes or major stressors in your life.
Make a list of your key medical information, including any other conditions for which you're being treated and the names of any medications, vitamins or supplements you're taking. Your doctor will also want to know if you have any family history of lupus or other autoimmune disorders.
Take a family member or friend along, if possible. Sometimes it can be difficult to soak up all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
Write down questions to ask your doctor. Creating your list of questions in advance can help you make the most of your time with your doctor.
For lupus, some basic questions to ask your doctor include:
What are the possible causes of my symptoms or condition?
What tests do you recommend?
If these tests don't pinpoint the cause of my symptoms, what additional tests might I need?
Are there any treatments or lifestyle changes that might help my symptoms now?
Do I need to follow any restrictions while we're seeking a diagnosis?
Should I see a specialist?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:
What are your symptoms? What part of your body is affected?
When did you first notice these symptoms?
Have your symptoms changed over time?
Do your symptoms seem to come and go?
Have you noticed anything that seems to trigger your symptoms?
Do your symptoms include extreme fatigue?
Have you had pain, stiffness or swelling in your joints?
Does sun exposure cause you to develop skin rashes?
Do your fingers or toes turn cold, pale or purple from cold or stress?
Do your symptoms include chest pain with deep breathing?
Have you experienced shortness of breath?
Have you had an unexplained fever?
Do your symptoms include any problems with memory or concentration?
How often do you feel anxious or depressed?
How much do your symptoms limit your ability to function at school, work or in personal relationships?
Have you been diagnosed with any other medical conditions?
Are you taking any medications, including over-the-counter and prescription drugs as well as vitamins and supplements?
Have any first-degree relatives such as a parent or sibling had lupus or another autoimmune disease?
Are you pregnant or do you plan to become pregnant?
What you can do in the meantime
While you're waiting for your appointment, get as much rest as your body seems to need and limit activities that wear you out. Try to reduce stress and schedule time only on activities that you enjoy and that help you manage stress. You may find that relaxation techniques such as yoga and meditation help improve your symptoms and your ability to cope.
Tests and diagnosis
By Mayo Clinic staff
Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders. For these reasons, doctors may not initially consider lupus until the signs and symptoms become more obvious. Even then, lupus can be challenging to diagnose because nearly all people with lupus experience fluctuations in disease activity. At times the disease may become severe and at other times subside completely.
American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:
Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
Laboratory tests
Your doctor may order blood and urine tests to determine your diagnosis, including:
Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies produced by your immune system indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus. The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.
Tests and diagnosis
By Mayo Clinic staff
Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may change over time and overlap with those of many other disorders. For these reasons, doctors may not initially consider lupus until the signs and symptoms become more obvious. Even then, lupus can be challenging to diagnose because nearly all people with lupus experience fluctuations in disease activity. At times the disease may become severe and at other times subside completely.
American College of Rheumatology criteria for a lupus diagnosis
The American College of Rheumatology (ACR) has developed clinical and laboratory criteria to help physicians diagnose and classify lupus. If you have 4 of the 11 criteria at one time or individually over time, you probably have lupus. Your doctor may also consider the diagnosis of lupus even if you have fewer than four of these signs and symptoms. The criteria identified by the ACR include:
Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
Scaly rash, called a discoid rash, which appears as raised, scaly patches
Sun-related rash, which appears after exposure to sunlight
Mouth sores, which are usually painless
Joint pain and swelling that occurs in two or more joints
Swelling of the linings around the lungs or the heart
Kidney disease
A neurological disorder, such as seizures or psychosis
Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
Laboratory tests
Your doctor may order blood and urine tests to determine your diagnosis, including:
Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease, but it may be elevated if you have lupus, another inflammatory condition or an infection.
Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies produced by your immune system indicates a stimulated immune system, which is common in lupus and other autoimmune diseases. A positive ANA doesn't always mean that you have lupus, however. ANA levels can be elevated if you have an infection or if you're taking certain medications. If you test positive for ANA, your doctor may advise more-specific antibody testing and refer you to a rheumatologist, a doctor who specializes in musculoskeletal and autoimmune disorders such as arthritis or lupus.
Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs. It may also show an enlarged heart as a result of a buildup of fluid within the pericardium (pericardial effusion).
Electrocardiogram (ECG). This test measures the pattern of electrical impulses generated in your heart. It can help identify irregular rhythms or damage.
Syphilis test. A false-positive result on a syphilis test can indicate anti-phospholipid antibodies in your blood, another indication of lupus. The presence of anti-phospholipid antibodies has been associated with an increased risk of blood clots, strokes and recurrent miscarriages.
edyebeady, my daughter had urinary reflux on both sides, one worse than the other though, we had no idea until she was about 3 months old. She had it for years, but suddenly it resolved itself according to the doctors and the reflux test. She had regular reflux testing done every 3 months, they used a machine that tracked the dye in her urinary tract almost like an Xray and we were able to actually watch the reflux as it happened.
Asperger's is a form of Autism.
She just has times when she runs a fever, is very fatigued, and complaining of stomach pain, joint and muscle pain, and when she's feeling like this, she says she feels like she's foggy headed, I would guess much like I have my "brain fog" with my fibro.
Lupus wasn't the first thing that came to mind when she started coming down with these symptoms. She's only 14, but she's very developed. More so than most of the kids in her middle school.
hellodian, that was my very first thought, that she was trying to get out of school to not take tests and things. But when she started complaining on days when there was activities I know she would almost rather die than miss, I just got this feeling that maybe she wasn't just trying to skip school. And then the nurse started calling me from school telling me she just wasn't feeling well, and was running a low grade fever too, so that sent me on the hunt for what could be wrong. An yeah, I remember being a teen and my mom having to practically douse me with ice water to move my hiney out of bed..lol..And during the summer I would sleep almost the whole day away. So I know what you're talking about.
Something I haven't noticed is whether sun exposure is causing any rashes. She doesn't spend a whole lot of time outside, but I do notice when we do go out her back seems to "stand out" a bit more.
I hope she doesn't have it. Lupus is very serious, and I don't know how you all cope as well as you do with it. As bad as my own problems are, I don't know if I would be strong enough to handle lupus. So all I can say is you all are very strong people to be able to face this on a daily basis whether with yourself, or a loved one.
Much love and thanks to you all for your insights.
Yeah, edyebeady, like me, and like you, she had spells where when she would get sick, man she would be down big time. And took a bit to recover when we did.
And that was kinda where I got maybe my first hint at this possibility. My mother in law is a hair dresser, and one of her client's daughter has lupus, and also had urinary problems of similar nature, and similar symptoms growing up. She wasn't dx'ed until her senior year, and she had to really struggle with it in college.
Thank you all for the prayers and advice.
It could be anything, but what worries me most is the fact she is predisposed to almost anything regarding immune disorders. There are so many close relatives that have all sorts of immune related disorders it is kinda scary. Everything from lupus to Chrone's to rheumatoid arthritis. Please keep my daughter in your prayers for, if not a completely clean bill of health, at least something that is less than what I fear. Thanks again everyone!
Her ANA test was positive, and her Rheumatoid factor was positive..a 1:21 which I understand 1:20 is a "high normal" so she is just over the line.
So now the doc is sending us to a Rheumatologist for further testing. Doctor said she tested specifically for lupus, and that was negative, so we'll see what the Rheumy says. According to several people I've talked to signs can be neg. for a while before really showing up.
Thanks to you all for all of your support and prayers.