Children playing doctor is normal, but a real visit with your child to the doctor for a serious health concern is certainly no longer fun and games. There are few things more terrifying for a parent or loved one than having your child get diagnosed with a chronic autoimmune disease like systemic lupus eurythematosus (SLE).
In lupus, the immune system, which normally attacks foreign invaders like viruses and bacteria, turns against the body’s own cells and tissues. This can wreak havoc on almost all the systems and organs in the body. To explain this simply to a young child you might explain that, their immune-system (the health police of your body) is confused, because it’s supposed to protect you and instead it is attacking you.
Even though lupus has no cure, the prognosis for children with lupus is generally very good with proper treatment. We will cover, in some detail, causes, diagnosis, treatment, prognosis, as well as helping your child cope with having a chronic illness in this blog, Lupus in Children.
Generally speaking, there is no specifically known cause of lupus. There are patients who have genetic factors pre-disposing them to lupus, but not all patients with these genetic markers will develop the disease. There is also discussion that some environmental factors can trigger the immune response that causes lupus. Lupus is NOT contagious. While nothing has been proven to specifically cause lupus, some of the other possible triggers being studied are:
- Sun Exposure
- Drug reactions
- Hormones (for some children, puberty can trigger lupus)
- Exposure to cigarette smoke
- The Epstein-Barr Virus
- Some form of trauma to the body
Diagnosing Lupus in Children
Lupus presents very differently for each individual. Your child may have a physical sign like the butterfly rash, or general symptoms like fatigue, achiness in the joints, breathlessness, failure to concentrate (brain fog) and therefore are doing poorly in school. If you are concerned that your child has features suggestive of lupus, ask your doctor to do the necessary testing immediately, as the earlier the diagnosis, the better the prognosis will be. Diagnosing lupus in children is very similar to diagnosing lupus in adults. The disease of lupus can be very tricky to diagnose and can take some time in getting the proper diagnosis. Before confirming a diagnosis, the physician will take in to account several factors.
- The patient’s entire medical history or the signs and symptoms (It is very important to keep detailed records of your symptoms)
- Physical examination findings
- An analysis of the results from routine laboratory tests
- Analysis of specialized tests related to immune disorders
Systemic lupus has been diagnosed in 5,000 to 10,000 children and teenagers in the United States. In adults, 90% of those diagnosed are women, and among children, girls are affected four times more frequently than boys. The average age of diagnosis for pediatric lupus is just over the age of 12. Lupus is relatively rare before the age of 12 in girls before their menstrual periods begin, due to the major hormonal changes at the time of their first menstrual period at approximately this age.
A pediatric rheumatologist is typically the primary care-giving physician for children with lupus and can help you best navigate this complex disease. If you live in the United States, our referral network may be a good start to find a rheumatologist in your area. We will be making this network much more robust in the coming months. If you cannot find one on the network, please contact us at [email protected] and we will help you locate the best resources in your area.
The American College of Rheumatology has 11 criteria for diagnosing pediatric systemic lupus:
- Facial rash– The typical butterfly rash of lupus appears across the cheeks.
- Discoid rash– This is a raised, red, scaly rash that can cause scarring and temporary hair loss.
- Photosensitivity– Rashes and other lupus symptoms can be activated by ultraviolet light, this can come from the sun or even artificial fluorescent lighting.
- Oral ulcers- Ulcers inside the nose or mouth similar to canker sores are common in lupus patients, both adults and children.
- Arthritis- Pediatric lupus patients often suffer from pain or swelling in two or more joints.
- Kidney involvement- Kidney involvement is common in pediatric lupus, blood in the urine can be a sign of kidney involvement.
- Inflammation- The linings around the heart or the lungs can become inflamed causing shortness of breath with minimal activity.
- Involvement of the Nervous system – Psychiatric disturbances, lupus fog (cognitive impairment can present itself with difficulty in problem solving, memory, attention span, behavior control, and verbal ability, and seizures may be exhibited by pediatric lupus patients. Cognitive impairment is believed to affect up to 59 percent of children and teens with SLE. Children and teens are at special risk for cognitive impairment because these functions are actively developing during childhood and are not completely developed until early adulthood. This is why psychological support and educational help are essential parts of lupus treatment for children presenting with these symptoms.
- Blood disorders- A decrease in white or red blood cells can be caused by lupus.
- Abnormalities of the Immune system- Similar to adults, pediatric lupus patients produce antibodies against normal body cells that may be apparent on a blood test.
- Antinuclear antibody– This is the most common type of lupus antibody and is eventually found in almost everyone with lupus.
For children or teens, at least four of these criteria must be met to make a diagnosis of lupus.
What is the treatment for lupus in children?
While there is no cure for lupus, proper treatment can be of great benefit towards maintaining and improving quality of life as well as prevention of more severe complications such as organ damage. As lupus manifests differently in each patient, treatment options will vary depending on the severity, signs and symptoms with which the child is presenting.
While the pediatric rheumatologist is the primary physician usually treating a child or adolescent with lupus, it may be necessary to seek out other specialists depending on your child’s symptoms. These specialists can include: pediatric rheumatologist, nephrologists, cardiologists, nurses, counselors and physical therapists who can provide necessary and appropriate treatment to ensure your child has the opportunity for the best outcome with his/her physical and psychological health.
Some of the medications that may be prescribed are listed below. For a more in depth description of these treatment options, please see our blog, Lupus Treatment Options: Lupus Medications.
- NSAISs or Nonsteroidal anti-inflammatory drugs may relieve pain associated with inflammation.
- Antimalarial drugs like hydroxychloroquine (Plaquenil)-Prevents [lupus flares] by controlling the immune response.
- Corticosteroids like Prednisone– These control inflammation
- Immunosupressants such as azathioprine (Imuran), mycophenolate mofetil (Cellcept), methotrexate, cyclophosphamide (Cytoxan), and rituximab (Rituxan) can be used in cases where the lupus is more active.
- Calcium and vitamin D supplements to prevent osteoporosis (a possible side effect of long-term use of corticosteroids)
- Other topical medications and even sunscreen can be prescribed for discoid lupus or lupus of the skin, or for those with SLE that have photosensitivity.
What is the prognosis or long-term outlook for children diagnosed with lupus?
Recent advances have led to earlier diagnosis, better diagnostic tools and more effective treatments which have significantly improved the quality of life and life expectancy for lupus patients. With modern therapy, children now do nearly as well as adults.
The prognosis for children and adolescents with systemic lupus has improved dramatically over the past twenty years and with proper treatment, children diagnosed with systemic lupus erythematosus generally have very good outcomes. The survival rate after 5 years following the beginning of treatment is nearly 100% and 85% at 10 years. There is a greater risk of early atherosclerosis (clogging of the arteries) and heart disease when they become young adults, in children with SLE. It is important to follow the treatment plan that you and your physician decide upon in order to insure the best possible outcome for your child. Failure to take the prescribed medications and follow treatment can cause problems like kidney disease, other infections, or nervous system complications.
Helping your child cope with a lupus diagnosis
Lupus can require a big change in a child’s lifestyle and this can be scary and confusing. Because these children have to deal with the symptoms of lupus plus the side effects of medications while they are trying to fit in at school and keep up with their friends, the treatment plan for a child with lupus or any chronic illness will most likely include both medical doctors as well as counselors, social workers and/or psychologists to help your child navigate the thoughts and feelings that may arise after a lupus diagnosis. For children or adolescents who suffer with visible lupus skin rashes (cutaneous lupus) and/or lupus hair loss (alopecia) or scarring from discoid lupus, the emotional effects can be very devastating and will require support and understanding from family and friends and perhaps even help from a mental health counselor. Support groups for children and teens with lupus can be great resources to let them know that they are not alone. See the bottom of this blog for some great resources for children and teen lupus groups.
Counseling may also help the child or teen deal with the fact that he or she has the disease of lupus, and understand the importance of keeping doctors’ appointments, getting regular blood tests, taking medications, and maintaining a healthy lifestyle by eating right and exercising (as much as is possible depending on their physical limitations.)
With the right medication and treatment plan along with proper attention to living a healthy lifestyle and support and guidance from their parents and doctors, most kids with lupus can go to school with no problem. Many can also participate in lots of normal activities, play sports and do all of the ‘normal’ things with their friends that they would do if they didn’t have lupus. The goal is to help them live as normal a life as possible.
5 things that can cause insecurity in the young lupus patient:
- Being scared of losing their good health and feeling sick.
- Concern that they will no longer be able to participate with friends or in other activities.
- Not understanding their disease or the process/value of treatment.
- Feeling like they may be dependent on others.
- Feeling useless or a burden because of their disease.
- Feeling isolated from friends because they feel different, even if it is self-imposed isolation.
Here are some tips to help your child with these feelings:
- Be a good listener and get them professional help immediately if you feel that they need it or are showing signs of depression.
- Let them know that there is always someone there that they can talk to about how they feel.
- Learning about lupus can help a child (with lupus) better understand their disease and feel supported and less isolated. The “we are in this together”, or “we are a team “mentality.
- When the disease flares up or has periods of activity, symptoms like pain, fever, and fatigue make daily routines very difficult if not impossible for the child. Help them stay in the loop at school and socially as much as possible by maintaining the lines of communication in order to decrease their feeling of isolation when they need to be home for an extended time. This will help them maintain the sense of ‘normal’ very important to children.
- Encourage them to rest and relax and listen to their body without imposing guilt or disappointment.
It can be very scary to receive a lupus diagnosis for your child, and cause you to become uncertain about your child’s future. The good news is that strides are continually being made in the discovery of better diagnostic tools and more effective medications. With the combination of correct treatment, medication, and living a healthy lifestyle, children with lupus can look forward to leading a long and productive life.
Monitoring closely your child’s activities can help avoid things that may trigger flares. This is not easy with busy and independent pre-teens and teens, but your guidance and attentiveness can really support healthy decision making on their part. Stay engaged.
We encourage both you and your child (if they are old enough) to reach out to friends, family, and join support groups to share your/their feelings and fears. We would like to remind you to be your child’s best advocate, find a physician with whom you are comfortable, take great notes, and whenever possible, bring a support person with you to each visit to help remind you of the doctor’s advice and information regarding your child’s treatment plan.
We are always here for you at Molly’s Fund, you are not alone in this. Please join our online community and share your story or ask us any questions you may have here: [email protected]
Here are some groups/pages on Facebook for children and teens with lupus that might be worth checking out:
and you can always visit us and be part of our Molly’s Fund family on Facebook!
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus.
**All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.