Systemic Lupus Erythematosus(SLE) in Children by Dr. Sagar Bhattad

10 min read

Written by Sindhuja Prabhu

Sindhuja Prabhu

To see your child fall sick is nothing alarming but it does cause worry. However, if the child keeps falling sick ever so often without any apparent cause, it can be quite scary too for a parent. A long-term disease, especially autoimmune is not a diagnosis any parent wants to hear.

An autoimmune disease will cause the immune system to attack the body instead of protecting it. It will mistake the healthy cells for foreign cells and attack them. There are a number of autoimmune diseases that can affect even children. While some of the autoimmune diseases can be due to genetics, the reason for most is still unknown. Systemic Lupus Erythematosus in children is one such autoimmune disease that can severely impact the quality of life. It is a tough disease to diagnose, treat and live with.

In This Article

What is Lupus (Systemic Lupus Erythematosus)?

Lupus is an autoimmune disease that affects the body. It is a long-term disease that causes the immune system to become hyperactive and attack its own healthy tissues. It can cause inflammation, joint aches, rashes, fever, and sometimes even damage the organs in the body.

Lupus is more common in women than in men. It is also seen more among people of certain ethnicities. However, the exact causes for Lupus being an autoimmune disease are not known.

Systemic Lupus Erythematosus (SLE) is one of the most common types of Lupus. SLE is a systemic condition that can affect the entire body. This variant of Lupus goes through cycles where the symptoms can be mild or severe. SLE is a serious condition that can affect the organs or the entire organ system in the body. It can even cause inflammation in the heart.

Common Medications That Can Cause SLE

Sometimes certain medications can cause SLE too. Around 80 different drugs are part of this list that can cause SLE. Some of the common drugs that can cause SLE are:

  • Oral Contraceptive Pills
  • Certain Thyroid Medications
  • Antifungal Medicines
  • Antibiotics
  • Hydralazine, a Medication for Hypertension
  • Procainamide , a Medication for Heart Arrhythmia
  • Isoniazid, an Antibiotic for Treating TB

In such cases of SLE that are brought on medication, the symptoms will subside once the person discontinues the medicines. Please note – This type of SLE due to drugs, is very rare.

Can Systemic Lupus Erythematosus Occur in Children?

SLE in Children

Yes, it does. Lupus can affect adults, children, men, women, everyone.

Lupus in children is seen to impact the joints, skin, and some major internal organs like –

  • Liver
  • Brain
  • Kidney
  • Heart
  • Lungs

Lupus can be more aggressive in children than in adults. Children with an early onset of Lupus are at a higher risk of severe organ damage in the long run.

At What Age Does Lupus Start in Children?

Lupus can affect children around the age of 12. It is mostly seen to affect teenagers. One of the reasons for the onset of Lupus at this age could be the hormonal changes a child experiences. Reproductive hormones are on the rise around this age. This could also be why Lupus is more common among women than in men.

Though the symptoms and effects of Lupus in children are similar to those in adults, it can be more severe in children. It can affect them more and cause more severe damage when compared to the effect on adults.

What are the Major Causes of Lupus in Children?

girl exposed to sun -cause of SLE

Lupus is not a contagious disease. In a few rare cases, women with Lupus can pass it on to their babies, genetically. These children develop a form of Lupus called Neonatal Lupus. However, this happens in less than 1% of the women diagnosed with SLE.

SLE is generally not found in children below the age of 5. Neonatal Lupus has no relation to SLE. Also, just because the Lupus genes are present in a child, the child need not necessarily develop Lupus.

Apart from genetics, some of the other factors that can trigger Lupus are:

  • Reaction to certain drugs as mentioned earlier
  • Infections
  • Sun exposure
  • Exposure to cigarette smoke
  • Hormonal changes during puberty

Signs and Symptoms of Systemic Lupus Erythematosus in Children

Symptoms of Systemic Lupus Erythematosus in Children

Though Lupus is mostly seen only in teenagers, in rare cases it can affect younger children too. How can you determine if your child in fact has Lupus? Here are some telltale signs and symptoms that can indicate Lupus in your child:

About one-third of the children diagnosed with Lupus will develop a rash on the bridge of their nose and cheeks (butterfly rash).

In the case of discoid Lupus, a disc-shaped rash along with raised patches can develop. Previous skin outbreaks can also leave scars.

  • Sun exposure can cause rashes
  • Mouth ulcers
  • Swelling of the joints – arthritis – more common in the toes and fingers
  • Fluid build-up around the lungs or heart
  • Problems with the kidney – it can be mild or in certain cases, even lead to kidney failure.
  • Anaemia – low red blood cells
  • Low white blood cells or platelet count
  • Abnormal results in antibody tests
  • A high reading in ANA (antinuclear antibodies)
  • Stiffness, swelling, or pain in joints
  • Severe weight loss
  • Loss of appetite
  • Hair loss
  • Lack of energy
  • Swollen lymph nodes
  • Raynaud’s phenomenon
  • Fever

Lupus goes through cycles where a child can experience remissions or flare-ups when the disease is active. If the symptoms were brought on by certain medications, the symptoms can go away when the medicine is discontinued.

[Read : Juvenile Idiopathic Arthritis in Children]

How is SLE Diagnosed in Children?

ANA test to Diagnose Lupus

Lupus is also known as the great imitator or the disease with 100 faces since it can mimic many other diseases. It can be quite difficult and tricky to diagnose Lupus.

The signs and symptoms mentioned above, which can indicate a possibility of Lupus can be quite confusing with other illnesses that have similar symptoms. It is important to remember; these are just possible symptoms of Lupus. Just because your child has a few of the symptoms mentioned above, it does not mean your child definitely has Lupus.

It is difficult to diagnose Lupus in a child as there is no straightforward test to do so. The doctor will decide on Lupus, based on symptoms, physical examination outcome, diagnostic results, imaging tests, and medical history (including family’s).

The doctor will check for various signs of inflammation in the body. It will include heat, pain, swelling, redness, reduced or loss of function in certain places in the body. Since inflammations can occur inside the body as well as outside, the doctor can also check the organs via tests, scans, etc.

Lupus will present itself over time. The diagnosis can take time for many people as the doctors will require multiple tests to rule out other possibilities and wait for the disease to present itself, to confirm their doubts. Since there is no single test to easily diagnose this disease, there can be quite a number of tests; some may be taken multiple times too. Since symptoms flare up only when the disease is active, a test result can be negative despite the child having Lupus.

Treatment For Systemic Lupus Erythematosus in Children

Kid taking medicine

There is no permanent cure for Lupus – both for children and adults. The doctor will prescribe medications and treatments to control the symptoms and the progress of the disease itself. The main goal for the doctor would be to keep the disease under control to prevent it from attacking vital organs in the body.

A team of doctors and medical care professionals will work together to provide the best treatment possible for a child with Lupus. Apart from the diagnosing doctor and nurse, a pediatric rheumatologist, physical therapist, and even counsellors will be part of this team.

These professionals will constantly check for the progress of the disease to ensure it does not spread to other parts or organs of the body. Treatment and therapies can be adjusted along the way.

Since Lupus affects children around their teens, it can be quite a mental trauma that requires professional counselling; especially since Lupus can cause very apparent rashes on the face.

The medications will depend on how severe the disease is in your child and which parts of the body the disease affects. The rheumatologist can successfully control the progress of the disease with certain medications.

Some medications that can be prescribed are:

  • Corticosteroids for inflammation control
  • Hydroxychloroquine to control the flare-ups
  • Immunosuppressants to control the immune system’s hyperactivity
  • Biologics to aid in the proper functioning of the immune system
  • Pain relievers
  • Antimalarials for skin protection from UV light and rashes
  • Calcium and Vitamin D supplements to prevent osteoporosis – a possible side effect due to long-term use of corticosteroids.

[Read : Biologics For Autoimmune Diseases – A New Treatment For Children]

After Treatment For Lupus in Children

Since there is no permanent cure for Lupus, the child will be under constant watch. The main aim will be to push the disease into remission so that there are no flare-ups. When the disease is in a remission phase, there will be very little to no symptoms.

When the symptoms and flare-ups reduce, the extent of damage to the entire body and the organs can be reduced. So, the doctor will take regular tests to keep a watch over the disease. They will keep asking for regular blood tests to keep a watch on the blood cells – both red and white.

Corticosteroids and other strong medicines can have side effects when used continuously for long term. Some of the possible side effects are:

  • Suppressed immune system – which can make the child vulnerable to other infections, which will require treatments as and when an infection occurs
  • Weight gain
  • Stretch marks
  • High blood pressure – the doctor might give extra medicines or adjust the dosage of current medication to manage this
  • Diabetes
  • Osteoporosis
  • Cataracts
  • Depression
  • A fall in white blood cells (certain medicines) – regular blood tests will be taken to keep an eye on this

The treatment and medicines can keep changing based on the progress of the disease, side effects, and other infections. Since hormones can impact the flare-ups, your child’s disease might go into remission or flare up at any time. When symptoms are under control, the medicines will also be reduced accordingly.

Can Systemic Lupus Erythematosus in Children be Prevented?

Kid with doctor checking Lupus inflammation

Sadly, no. Like any other autoimmune disease, Lupus cannot be prevented either. You can only control the disease and prevent further damage within the body, after diagnosis.

For children whose mothers have SLE or other forms of Lupus, there is a small chance of transferring bad antibodies to the offspring. You can watch out for symptoms and take certain tests if needed, for these children, to help in an early diagnosis.

In other cases, an early diagnosis is the best we can expect. With an early diagnosis, the damages within the body and to the organs will be minimal. Medicines can help control flare-ups and other symptoms.

A pediatric rheumatologist will be the key doctor involved in the treatment of your child. There is nothing more you can do to “prevent” this disease.

Long Term Outlook For Children With SLE

kid having SLE physically active

A lupus diagnosis can be hard on a child. It can not only affect their appearance but can impact their growth and quality of life too. As a parent, you can do a lot to help your child. You need to teach your child to not only manage the symptoms but also change their habits and way of living.

Managing Symptoms

  • You need to identify the triggers for your child’s Lupus symptoms. Avoiding these triggers can help reduce flare-ups and keep the disease in remission successfully.
  • Since your child cannot avoid going out into the sun, teach them to use a good sunscreen and wear clothes that can protect their skin from the harsh sunlight. This includes wide hats, full pants, long sleeves, etc.
  • Their immunity will be low, so it is important to maintain good hygiene. Teach them to wash their hands properly and to stay safe around other people with colds or infections.
  • They can feel more tired than kids their age. It can be tempting to push themselves to keep up with other children. Teach them to take a break when needed and not feel guilty about it.
  • Ask them to inform an adult or seek help when needed. Teenagers might feel conscious to seek help. This could be when they see symptoms or feel weak.

Teaching Children Better Habits

If diagnosed at an early age, the child will eventually fall into a routine of taking care of themselves, as they grow. Here are some ways you can help them develop healthy habits to manage their Lupus:

  • Take medicines regularly, as missing them can lead to flare-ups.
  • Do not miss any health check-ups or doctor appointments.
  • Lead a physically active lifestyle despite fatigue and tiredness.
  • Eat healthy to support the immune system with nutritious foods.
  • Reduce stepping out in the sun by planning activities early or late in the day.
  • Get enough sleep and rest to help the body recover and the immune system stay strong.

[Read : 10 Most Important Nutrients Needed For Strong Immune System in Kids]

Keeping a Track of the Disease

  • Since the disease has active windows and goes into remission every now and then, it helps to track the disease. Staying organized and proactive can help both you and your child to handle the disease better.
  • Maintain a journal. Make entries of symptoms, triggers, flare-up episodes, medicines taken, treatments, side effects, etc. You will have a better understanding of what causes the symptoms and what really helps your child.
  • Keep all records in order, for quick access in case of an emergency. If you want to show your doctor what happened the last time a certain symptom occurred or medicine was prescribed, this can be very useful.
  • Keep a copy of your child’s immunization and update it as and when a new vaccine is given.
  • Set reminders to ensure you don’t miss any appointments.
  • Inform immediate family members about the disease and what to do in case of a flare-up. If you are not around for immediate help, some adult should be in a position to help your child. keeping a “to-do” list in case of flare-ups can be helpful.

Lupus, especially SLE can be very aggressive in children. Since there is no permanent cure, the only way around this is to manage the symptoms and learn to live with them. It can be hard on both the child and the parents. As a parent, you need to be patient and vigilant to help your child lead a healthy and happy life.

Teenagers can be difficult, especially with a disease like Lupus. Providing them with proper medical care, emotional support by the means of counseling and group therapies can help them handle the situation better.

Read Also: What Is Intravenous Immunoglobulin? How Does It Work in Children With Low Immunity?

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Sindhuja Prabhu,M.Sc (Psychology),PGDBM

Sindhuja, a mother of two, is an obsessive mom with a keen interest in psychology, especially child psychology. Her quest for knowledge and way with words led her to become a passionate content writer. She transformed her love for writing into a full-fledged career which incidentally also turned up being the perfect stress buster for the last 5 years.Read more.

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