Immune disorder in child

Childhood Autoimmune Disorders

Autoimmune disorders are very rare in children, but if your child or someone in your family is coping with one, you naturally will have concerns. Many parents worry about whether there is a relationship between pregnancy and childhood autoimmune disorder risk, and about the impact of autoimmune disorder treatment on their children.

Common Autoimmune Disorders in Childhood

“The most common autoimmune disorder that I know of in children would be celiac disease,” says Jane M. El-Dahr, MD, professor of clinical pediatrics and chief of the section of pediatric immunology, allergy, and rheumatology at Tulane University School of Medicine in New Orleans. “Celiac disease (gluten or wheat sensitivity) affects 1 to 3 percent of the population and is woefully under-diagnosed. It is hard to think of another one that would be as common as 1 percent of the population.”

Other autoimmune disorders that occur in childhood include:

  • Juvenile arthritis, which affects about 1 in 1,000 children
  • Type 1 (juvenile) diabetes, which affects 1 to 2 of every 10,000 children
  • Immune (or idiopathic) thrombocytopenia purpura, which occurs in 3 to 8 out of 100,000 children.

Pregnancy and Autoimmune Disorder Risk in Children

As a mother, it’s natural to wonder whether you could pass on your autoimmune disorder to your child or in some other way cause your child to have an autoimmune disorder. “If a pregnant woman has an autoimmune disorder — for example, lupus — those antibodies can be passed through the placenta to the infant, who then will have the same antibodies for four to six months and may have symptoms … which get called neonatal lupus in this example,” explains El-Dahr.

Strictly speaking, pregnant women do not permanently pass their autoimmune disorders on to their children. But when you’re pregnant, you should make sure your doctors are aware of both your autoimmune disorder status and your family history for the following reasons:

  • You may have to change the medications you use to manage your autoimmune disorder during pregnancy.
  • Mothers who have antibodies to their own platelets can cause bleeding problems in their infants. For this reason, the babies are usually delivered by cesarean section with precautions to prevent bleeding or injury.
  • In general, autoimmune disorders are known to have a genetic component. If you have an autoimmune disorder or if they’re common in your family, there is an increased risk for your offspring to develop an autoimmune disorder. However, you and your children may not develop the same disorders.

Concerns About Treating Children With Autoimmune Disorders

In years past, the impact of medications such as steroids on growth was one of the dominant concerns for both physicians and parents trying to help children with autoimmune disorders.

“The biggest concerns of treatment would be the use of steroids affecting growth for those who take prednisone, but even more is the psychological impact of having a serious chronic disorder,” says El-Dahr. Modern medicines are much more targeted, depending on the autoimmune disorder in question, so the impact on growth is less of a concern.

Today, parents and physicians recognize that the emotional and psychological impact of having an autoimmune disorder requires attention. Children and teens may need help:

  • Coping with the diagnosis of a lifelong chronic illness.
  • Coping with family tensions. El-Dahr notes that divorces make this more complicated, especially when parents are not on the same page about how to manage their child’s autoimmune disorder.
  • Coping with peers. Depending on the disorder, children may face teasing or ostracism at school. For example, children with Crohn’s disorder or ulcerative colitis often face teasing because of how often they need to go to the bathroom or because their peers mistakenly think their disorder is contagious.

El-Dahr recommends finding support groups to help with these and other concerns. Internet support groups make it possible for families coping with a rare autoimmune disorder in childhood to find other people in the same situation over great distances.

Infants and Children Living with PI

Emotional
Help your child deal with feelings about the diagnosis. Try to understand the many emotions that children experience regarding their primary immunodeficiency disease. You can help your child cope with difficult emotions by talking openly about how everyone in the family may be experiencing something similar. Providing routine and predictable times to check in with your child gives them opportunities to talk and to share, and it gives you opportunities to reassure them that their feelings are normal and acceptable. You can ask questions in a way to get your child talking by using open-ended questions. “What kind of questions do you have?” is very different than “Do you have any questions?” You can also ask questions about specific behavior: “Lately, you have been getting angry about things that do not normally bother you. Why do you think that is?” Finally, provide ways to help your child get rid of unhappy feelings. Some examples include using play or art to express feelings.

Give your child some choices. Many children living with primary immunodeficiencies tend to think they have little control over their lives. Children need opportunities to make choices—to have power over any part of their lives they can control. This can be done by offering the child choices whenever possible (such as what they would like for dinner, what activity they would like to do that day). When appropriate, it can also help to have the child participate in making small decisions about their treatment (such as what arm to get a shot in, what day of the week or month to take their treatment, what site to use to get their infusion, etc.).

Social
Prepare your child for the reactions of others. Children with primary immunodeficiency diseases often do not know how or what to tell others about their illness and symptoms, particularly at times when they look healthy on the outside. You can help by teaching your child a simple and short explanation of the diagnosis. Make sure your child is comfortable explaining what is necessary to keep well. It may help for you and your child to role-play examples of how to answer questions that others might ask and to handle any teasing that might occur. Be sure to include siblings in these discussions as well, as they often experience similar situations with their peers.

Look for role models. Many children with primary immunodeficiency disorders feel different and isolated. Being around others with the same diagnosis can often help them in this regard. The Immune Deficiency Foundation (IDF) offers many ways for children and families to interact throughout the year, including family retreat weekends, patient education meetings and a national conference held every other year. You can share and ask questions on IDF’s social network, IDF Friends, www.idffriends.org. You can ask IDF to connect you with a trained peer support volunteer that has experience living with a child who has a primary immunodeficiency disease. Children often benefit from having contact with others who have the same illness. IDF can connect your child with other children living with a primary immunodeficiency disease.

Coordinate with your child’s school. Living with a primary immunodeficiency disease may disrupt a child’s schooling. It is important for parents to meet with teachers, counselors, nurses and administrators to explain their child’s primary immunodeficiency disease and the potential impact on school (such as frequent absences, fatigue, activity restrictions). You should talk about what parents and other children in the class should be told about your child’s primary immunodeficiency disease. A plan should be developed to help your child keep up with schoolwork when they cannot attend school. A good resource to help you coordinate with your child’s school is the IDF School Guide, which you can download here or order here.

Family Life
A child living with a chronic illness affects the entire family system. Research shows that how well a child with a chronic illness copes depends on how the entire family is supported. A family that has healthy coping skills is more likely to follow treatment and care plans and to be active in seeking support.

Chronic illness can affect your family in many ways. You may experience increased worry, stress and problems with sleep or appetite, sadness, anger, a sense of loss and even a feeling of relief. These conflicting emotions can be difficult to deal with, but they are a normal part of the healing process for you and your family. Parents may have less time for each other and for social activities they once enjoyed. Planning for fun times may be difficult due to the unpredictability of the child’s illness. Financial worries may also increase.

Siblings may experience a wide range of emotions when their brother or sister is living with a primary immunodeficiency disease. These emotions often include anger, guilt, embarrassment, sadness, loneliness, fear and confusion. Siblings may also experience jealousy if they receive less attention. It is important to talk with children about their feelings and not to simply dismiss them thinking they will “get over it” on their own.
Families can benefit from strategies that help them to relieve stress, share responsibilities, gain support and explore emotional worries. Approaches include:

Help your child lead as normal a life as possible. To whatever extent possible, you should try to treat your child with a primary immunodeficiency disease just like any other child. At the same time, you need to take into consideration your child’s health and any special needs that they may have. This can be quite a balancing act, but it is important for parents to encourage their child’s participation in activities that involve other children of the same age.

Maintain family routines. You should, as much as possible, maintain regular family routines (such as wake-up times, mealtimes, bedtimes, regular activities, chores, discipline, etc.) as this can help offset some of the disruption experienced due to living with a primary immunodeficiency. Children typically do better when their daily routines are predictable and consistent. Of course, this is not always possible, but every effort should be made to maintain regular routines and schedules for all family members.

Help your other children cope. A child living with a primary immunodeficiency disease demands a lot of parental attention. It is no wonder that brothers and sisters often feel jealous, angry and lonely and worry about their sibling and sometimes about their parents. They also might worry that they might get the disease. You should explain the disease to your other children. Try to get them to ask questions and to express their concerns. Parents need to keep open lines of communication with all of their children. It often helps children feel like an important member of the family if they can have a part in caring for their sibling in some way. One way to help siblings is by focusing on fun family activities when your child with a primary immunodeficiency disease is healthy. It can be beneficial for parents to spend individual quality time with each child, letting each of them know how much they are loved, valued and appreciated.

Make having fun together as a family a priority. Living with a child’s primary immunodeficiency may cause the whole family to be under increased stress. Getting support from each other may be harder during times of stress, but it is also even more important. Spend time together that is not focused on the disease and make it a priority to carve out time for whole family activities. It is equally as important to have special alone time just for parents and even for one-on-one parent-child dates, as mentioned earlier—each parent spending individual time with each child.

Coordinating Your Child’s Healthcare
When your child is diagnosed with a primary immunodeficiency disease, you become part of your child’s healthcare team and their main advocate. Your role in monitoring your child’s symptoms, responses to treatments and communicating your observations and concerns is vital to the medical team’s assessment and treatment of your child. In many cases, more than one provider will be involved in caring for your child; therefore, coordinating communication and keeping comprehensive and accurate records of your child’s medical course is essential. Many parents suggest that a journal is an invaluable tool to document events affecting your child’s medical care. The IDF eHealthRecord, an online personal health record designed for the primary immunodeficiency community, is another tool to help record your child’s medical information: www.idfehealthrecord.org.
Recommended information to record:

  • Brief history leading to the diagnosis, written by you or your child’s healthcare provider
  • Copies of laboratory evaluations confirming the diagnosis
  • Current list of providers caring for your child with accurate addresses and phone numbers
  • Chronology of important events, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to that therapy, surgeries and/or hospitalizations
  • List of your child’s current medications
  • Allergies to medications
  • Immunization record
  • Current insurance information
  • Explanation of benefits records can be kept in the journal or separately but should be periodically reviewed for accuracy

Insurance concerns that arise are more easily resolved through accurate record keeping, and a journal or IDF eHealthRecord will be useful if your child should need to see a new provider, especially in an emergency. This form of accurate record keeping shortens the lengthy, often repeated history-taking sessions by new providers, allowing more time to focus on the immediate issue at hand. It is wise for more than one person in the family to be aware of the child’s medical routine. A well-documented medical record maintained by you can be extremely helpful for those times when others care for your child.
In addition to bringing a journal to each medical visit, additional suggestions when visiting a medical professional include:

  • Prepare questions: Have a list of questions prepared in writing.
  • Take notes: Document the visit by writing details about the visit. When possible, take another family member or friend along. It is always wise to have more than one person familiar with the patient’s medical routine.
  • Plan ahead: Be prepared for a change in plans or long office visits. Sometimes you and your child will go for tests immediately after the visit or the visit could be extended for other reasons. If this is the case, you may need to make arrangements for your other children.
  • Communicate directly with the child: Encourage the medical professional to communicate directly with your child when possible. Although your child may be young, it is always appropriate for them to build a relationship with their healthcare providers.
  • Ask for written instructions: Request written instructions concerning medicines and treatments. This helps avoid mistakes by all parties, as well as give you written instructions to be placed in your journal or scanned and saved into the eHealthRecord.
  • Prepare a tote bag: Designate a special tote bag just for these medical visits and include the following items:
  • Toys and/or activities: It may not be wise to share toys at the doctor’s office because you do not want to go home with more germs. You can also prepare age-appropriate activities to engage them
  • Books: Take along favorite books or a new book to help your child stay occupied and calm during long waiting periods
  • Game device or smart phone: These are also useful for distraction and to alleviate boredom
  • Notebook: You or another family member can take notes
  • Contact list: Include a contact list with names and phone numbers of family, friends and school personnel
  • Snacks: Bring snacks in case the visit may be extended

Being Your Child’s Advocate
As a parent, you are your child’s best advocate. It is important to communicate with your child’s providers the concerns and questions you or your child may have. Using a journal or the IDF eHealthrecord will help you remember what to discuss with your child’s provider at various visits.
How you can advocate for your child:

  • Ask questions about your child’s diagnosis, treatment and plan. If you do not understand, ask again.
  • Inquire about what can be done to improve your child’s health such as diet, physical activity, sleep and social activities.
  • Maintain consistent communication with the school as your child may miss school days.
  • Know your insurance policy and communicate if there are any changes to your provider.
  • If your child receives immunoglobulin (Ig) therapy, make notes of how it is going and/or any side effects.
  • Build positive relationships with your child’s providers, teachers and therapists. Know whom to call when.
  • Ask about resources for further information at the local, state and national level.
  • Connect with IDF for additional resources: 800-296-4433.

Transitioning Responsibility to Your Child
As children develop, they begin to form their own thoughts and opinions of their care. Again, when it is appropriate, offer choices to your child. This helps your child build confidence because they have some control over decision-making and prepares your child to participate and eventually take care of themselves in adolescence and adulthood. The better prepared the child is, the easier the transition will be.

When to Ask for Help
Having a child with a primary immunodeficiency disease forces the entire family to cope with many changes and stressors. It can cause emotional and behavioral challenges for the child, parents, siblings and extended network of family and friends. Because of these challenges, family members may be more likely to experience adjustment difficulties as they learn to adapt.

It is important to support the child’s emotional and behavioral needs. It is also important to support the needs of the entire family. Counseling services can be a valuable part of your child’s treatment plan. The most successful families tend to be those who are working together as a team to face the new responsibilities of managing a long-term illness. They build on their family’s strengths to cope with the new stress and can help the family grow closer together.

Every situation is unique, but there are similarities in how children and families react to the stress of living with primary immunodeficiency diseases. Adjustment difficulties commonly observed in children with chronic health conditions and/or in their parents and siblings include the following:

  • Disturbance of mood: feelings of anxiety or fear, sadness and depression, hopelessness, irritation, anger, disinterest or lack of pleasure in activities formerly of interest, emptiness, guilt, and frequent worrying
  • Behavior difficulties: mood swings, temper outbursts, aggressive behavior, not cooperating with medical care, changes in activity or energy level, separation anxiety or clinging behavior, regressive behaviors, reenactment of their situation/trauma, and acting out by not listening, fighting, or even hitting
  • School: academic problems, change in school performance, and difficulty with concentration
  • Social issues: isolation from peers, feeling disconnected from people, lack of interest in things they previously enjoyed, and fights with friends
  • Self-esteem issues: sense of being different, low self-confidence, and negative self-comments about the way they look or feel
  • Family issues: increased strain in relationships, different perceptions of issues, blame, communication difficulties, fights with siblings, and ignoring other family members
  • Parent issues: time-management difficulties, financial worries, marital stress, guilt, self-blame and/or blame of others, grief, and discipline problems
  • Physical issues: changes in eating, sleep disturbances, stomachaches or headaches, tiredness, and over-activity

Remember that it is a sign of strength to be able to ask for help from counselors and other support professionals. Support can be sought at any time. You do not need to wait for a crisis. In fact, it is better to arrange for support sooner rather than later. Also, it is normal to experience the need for support at some times and not at others. Adjustment is an ever-changing process.

Addressing Your Needs
Parents should remember to take care of themselves. Addressing your own needs will allow you to provide better care for your child. Educate yourself about your child’s diagnosis. Being knowledgeable allows parents to make informed decisions about their child’s care and to know which behaviors and symptoms are normal and which are not. It also helps parents answer questions their child may have about their disease.
Take care of yourself. This may seem like a difficult task for many parents. Nevertheless, it is vital for parents to take care of themselves. Otherwise, you will not be able to give good care. It is important to get connected with other parents who know what it is like to have a child living with a primary immunodeficiency disease. Allow others to help by giving you a break and be sure to carve out time to do something you enjoy. Find someone to listen to your worries and make it a priority to spend quality time with your partner on a regular basis. Learn to deal positively with your stress by eating right, exercising, keeping a journal and spending quality time with your children.

Be hopeful. Coping with a primary immunodeficiency disease can be discouraging and scary. It is incredibly important to stay positive and hopeful. Do not ignore or dwell on your worries or negative feelings. Instead, recognize and address them in a positive manner. If you try to find the positive side of things, you will be teaching your child a valuable lesson as well as maintaining your own peace of mind.

Excerpted from the Immune Deficiency Foundation’s Patient & Family Handbook for Primary Immunodeficiency Diseases FIFTH EDITION Copyright 2013 by Immune Deficiency Foundation, USA. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice.

Pediatric Autoimmune Disease & Rheumatology

Symptoms of Autoimmune Diseases

Your child may experience vague symptoms, including:

  • Tiredness/fatigue
  • Long-term or repeated fevers
  • Rashes
  • Weight loss
  • Joint swelling, stiffness or pain

For the most part, autoimmune diseases are chronic and need lifelong monitoring and care. But medication can help reduce or stop the damage caused by some diseases. Our physicians can help your child transition from pediatric care to adult care.

A Rare Disease

Granulomatosis with polyangiitis (GPA), or Wegener’s granulomatosis (WG) is a rare disease that causes blood vessel walls to become inflamed, called vasculitis. This limits blood flow to tissues and can affect any organ.

Without treatment, GPA can be fatal. Our team is experienced in diagnosing and treating this condition early to make sure your child’s organs continue to work properly.

Medications can reduce your child’s symptoms or slow the progression of the disease. In severe cases, your child may need a kidney transplant.

Is there an average age you typically start seeing symptoms?

It depends on the diagnosis. We start seeing arthritis symptoms in preschool age children. Girls are afflicted more often than boys, at a 4 to 1 ratio. Commonly we see a three-year-old girl with a swollen knee. If the joints stay swollen, this may not be an injury. This could be a form of arthritis. Lupus does not usually present until after puberty.

How are autoimmune diseases diagnosed?

The most important part of diagnosis is discovering patterns. We need to get the story of the symptoms; when and how they appear, how long they are present, what makes them better or worse and what may be triggering them. Arthritis is a completely physical diagnosis. As a doctor, we have to touch the joint; is it warm, is it swollen, how does it move? Rashes can also be unusually difficult for someone to describe. We have to see what is going on with your child in person. Arthritis, lupus and JDM can’t be diagnosed with a lab test. They can help, but they do not tell us everything we need to know.

What causes autoimmune diseases?

We don’t know what causes autoimmunity. Unfortunately, when people search for triggers it can lead to blaming themselves. You may find on the internet that processed sugar, artificial dyes and gluten may be the cause. Changing diet can help, but we have not yet identified specific triggers. Some symptoms may even go away on their own. African Americans, Hispanics and Native Americans have an increased risk of developing an autoimmune disease.

Can children grow out of an autoimmune disease?

Absolutely! Many children grow out of the disease, in fact most do. Arthritis, lupus and JDM have natural flares and remissions. It is common to treat the flare with a one to three year course of therapy, then see how the patient does with no medications. We see many children completely off all steroids and autoimmune suppressants. Sometimes the disease can flare again, but we don’t know if or when.

Is there a cure?

While there is no cure, there are many treatments that can help slow the progression and control the symptoms. Many children achieve remission fairly quickly and have no permanent damage to the joints, skin or organs.

What are the treatments?

Some cases can be managed with anti-inflammatory medications (NSAIDs). Others can be managed with disease modifying medications (DMARDS), which are a step above over-the-counter drugs. Then we move to biological therapies or joint injections. Many patients take one shot once a month and you can’t even tell they ever had something wrong. Other treatments like physical therapy and ice and heat can also be helpful.

Education and support is an important component and will help you understand what is happening and what to expect. There is so much individualized care involved with an autoimmune disease. The main thing is to remember that we have a lot of tools and can help.

What can I do as a parent if I suspect my child has an autoimmune disease?

Parents can go to sites like the Arthritis Foundation at www.arthritis.org/oklahoma and they will have descriptions of typical patterns of disease. If your child has long term symptoms, see your primary care physician and ask for a referral. Don’t count on family history to tell you to come in or not. Family history of arthritis, for example, grandma has arthritis in her back, is not going to tell you much. Also, don’t assume because it doesn’t run in your family that your child doesn’t have it. Seek professional advice.

The parent is the first line. The parent is the best person to know what is happening with their child and the only one that can tell us the pattern at home. If you think something is going on but it is vague, start a calendar. Write down what is happening. Patterns are not always obvious, but if we have a pattern then it really helps to diagnose the disease. Be prepared to answer a lot of questions.

What can I do as a parent if my child has been diagnosed with an autoimmune disease?

There are a lot of resources and tools available. Knowing what to expect and what to do is crucial. The Arthritis Foundation offers a JA Power Pack, which is a toolkit with valuable information and tools to assist newly-diagnosed children, teens and their parents. You can request the free JA Power Pack by calling 800-283-7800.

Connect with other parents and children who are experiencing the same thing. You may even know someone, but because the child looks and acts like everyone else, you have no idea. There are social events, rallies, Facebook groups and support groups for parents. Visit the Arthritis Foundation at www.arthritis.org/oklahoma to find out more about support groups, activities and camps.

If you’re concerned, seek treatment. If your child has been diagnosed or you’ve identified the progression of symptoms and patterns, contact Dr. Sestak and she would be happy to visit with you. If it is autoimmune, Dr. Sestak will treat it even if it is atypical and make sure your child receives the right care. “I am not a quitter, I don’t give up and I keep digging.”

You are not alone. A diagnosis can be hard to figure out, but you will get there. You can contact Dr. Andrea L. Sestak, Pediatric Rheumatologist at Oklahoma Institute of Allergy, Asthma and Immunology at 607-4333 or visit okallergy.com for more information.

As a pediatric rheumatologist, I diagnose and treat kids with chronic autoimmune diseases. “Chronic” means that it can last for a long time. “Autoimmune” means that there is a disorder of the immune system, which, instead of protecting the body from bacteria and viruses, attacks the patient’s own tissues. There are over 100 autoimmune diseases.

What Is Lupus?

There are different types of lupus: skin only, systemic (affecting multiple organs), drug induced.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can affect various organs of the body, especially the skin, joints, blood, kidneys and central nervous system. The name “SLE” dates back to the early 20th century. “Systemic” means that it affects many organs of the body. The word “lupus” is from the Latin word for “wolf” and it refers to the characteristic butterfly-like rash on the face of some lupus patients, which is similar to the white markings on a wolf’s face. “Erythematosus” in Greek means “red” and it refers to the redness of the rash.

How Common Is It?

SLE is seen worldwide in both children and adults. Childhood onset SLE (cSLE) represents 15 to 20 percent of all SLE patients, affecting about ten out of one million children per year. Onset of SLE is rare before five years of age. It is more common in children of African American, Hispanic, Asian, and Native American origin.

What Causes Lupus?

The exact causes of SLE are unknown. What is known is that SLE is an autoimmune disease, where the immune system loses its ability to tell the difference between a foreign intruder and a person’s own tissues and cells. The immune system produces autoantibodies that identify the person’s own normal cells as foreign, and eliminates them. The result is an autoimmune reaction, which causes inflammation that effects specific organs (joints, kidneys, skin, or any organ where you have blood vessels).

Inflammation means that the affected body parts become hot, red, swollen and sometimes tender. If the signs of inflammation are long lasting, as they can be in SLE, then damage to the tissues may occur and normal function is impaired.

Is Lupus Genetic or Infectious? Can I Prevent It?

SLE is a multifactorial disease meaning It can be triggered by a number of factors, including environmental factors (such as sun exposure), viral infections (such as Epstein-Barr virus, which is the virus that causes mononucleosis), hormonal imbalance at puberty, stress and certain medications. SLE is not a genetic disease and it cannot be transmitted directly from parents to children. There is no prenatal testing to detect lupus during pregnancy

What Are the Symptoms?

The most common first symptoms in children are nonspecific complaints such as fatigue and malaise. Intermittent or prolonged fevers, weight loss and loss of appetite could also be seen. Over a period of several weeks, months, or even years some new symptoms may appear, including:

  • A variety of different skin rashes – the typical “butterfly” rash across the nose and cheeks occurs in one-third to one-half of affected children
  • Photosensitivity (where exposure to sunlight triggers a rash)
  • Ulcers on the inside of the nose or mouth
  • Hair loss (alopecia)
  • Raynaud’s sign (the hands turn red, white or blue when exposed to the cold)
  • Swollen and stiff joints (arthritis)
  • Muscle pain and/or weakness
  • Anemia
  • Easy bruising
  • Headaches
  • Seizures
  • Chest pain

Kidney involvement is present in most children with SLE and is a major complication of the long-term outcome of this disease. Symptoms of SLE can vary widely between each patient so each child’s complaints are different. All of the symptoms mentioned above can occur at any time during the course of the disease. The diagnosis of SLE is based on a combination of symptoms (such as pain), signs (such as fever) and test results. Other illnesses must also be ruled out.

Is the Disease Different from Adult Lupus?

Children with lupus may have similar manifestations as adults. However, childhood onset lupus is usually a more severe illness and has greater disease damage over time. Kids with lupus may develop kidney and or brain disease within the first 2-3 years of the diagnosis. It has a lifetime burden.

How Is It Diagnosed?

Clinical suspicion for lupus is the key to diagnosis. To make a formal diagnosis of SLE, the patient must have at least 4 out of 11 characteristics outlined by ACR (American College of Rheumatology). Laboratory tests can help diagnose SLE and decide which internal organs, if any, are involved. Many other tests are also available to look at the effects of SLE on different parts of the body. A biopsy (the removal of a small piece of tissue) of a kidney or skin is often performed when there is suspicion.

Can It Be Treated or Cured?

At this time, there is no cure for SLE. SLE treatment can help control symptoms of SLE and help prevent complications of the disease, including permanent damage to the organs and tissues. When SLE is first diagnosed, it is usually very active and may require high doses of medications to control the disease and prevent organ damage. In many children, treatment brings lupus flares under control. The disease may go into remission and little or no treatment is needed.

Lupus is a chronic, multi-system disease of inflammation that can consist of flares and remissions. Expert care is key to controlling this unpredictable disease. Nationwide Children’s Hospital’s Division of Rheumatology recently started Lupus Clinic for a multidisciplinary approach to children with lupus.

To schedule an appointment with a Nationwide Children’s Hospital rheumatologist, .

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A new study has raised the possibility that stress may cause autoimmune disease, such as lupus or rheumatoid arthritis, because it found a higher incidence of autoimmune diseases among people who were previously diagnosed with stress-related disorders.

I have patients who heard about this research and are saying, “I knew it!”

But before we accept a potential link between stress and autoimmune disease, let’s look at some details of the study and consider how we define the terms “autoimmune disease,” “stress,” and “stress-related disorder.”

What is autoimmune disease?

These are fascinating and mysterious conditions in which the body’s immune system “misfires” and attacks its own tissues. There are scores of autoimmune diseases out there. Some of the most well-known are rheumatoid arthritis, psoriasis, multiple sclerosis, and type 1 diabetes.

In some cases, a condition is labeled “autoimmune” based on conventional wisdom or expert consensus rather than hard science. And I’ve seen the term “autoimmune” used loosely to apply to any condition of unknown cause in which inflammation is present or the immune system appears to be active. But an infection could do the same thing. So perhaps some of these conditions now considered to be autoimmune will turn out to be chronic infections by an organism we’ve not yet identified.

What is stress?

A common definition of “stress” is any experience that causes tension, whether physical, psychological, or emotional, especially if it sets off the “fight or flight” response (during which the adrenal gland releases adrenaline, leading to rapid pulse and breathing, and increased blood pressure). This serves us well if chased by a lion. But it’s theorized that persistent stress (such as worry about finances, mental or physical health, or interpersonal relationships) could lead to chronic disease such as high blood pressure or autoimmune disease.

What causes stress for a person is highly individual. A common example is having to speak in public. Some people find it easy to give a speech in front of a crowd; for others, however, the exact same situation may feel nothing short of dreadful and causes worry for weeks in advance. A stressful experience can also be something quite positive, like getting married, or walking into a room on your birthday where friends and family are hiding. Surprise!

What is a stress-related disorder?

There is a big difference between stress and having a “stress-related disorder,” in which a particular, well-defined condition or disease develops following a specific and intensely stressful event. A dramatic example is post-traumatic stress disorder (PTSD), in which a serious physical or psychological injury leads to a host of problems including distressing, intrusive memories of the traumatic event; memory problems; apathy; and irritability.

Exploring the connection between stress and autoimmune disease

In this new study, researchers analyzed more than 100,000 people diagnosed with stress-related disorders and compared their tendency to develop autoimmune disease at least one year later with 126,000 of their siblings, and another million people who did not have stress-related disorders.

The study found that individuals diagnosed with a stress-related disorder

  • were more likely to be diagnosed with an autoimmune disease (about nine per 1,000 patient-years* who had stress-related disorders, but only about six per 1,000 patient-years among those without stress-related disorders)
  • were more likely to develop multiple autoimmune diseases
  • had a higher rate of autoimmune disease if younger.

*Patient-years is an expression that combines how many and for how long people are assessed in a study. If the frequency of a condition is 9 per 1,000 patient-years, that means 9 people would develop the disease among ,1000 patients monitored for 1 year, or among 500 patients monitored for 2 years, and so on).

A particularly important observation was that, for those with PTSD who were being treated with an SSRI (a type of antidepressant), the increased rate of autoimmune disease was less dramatic. While these observations are intriguing, they don’t tell us why or how a stress-related disorder might provoke or cause autoimmune disease.

The usual caveats about observational studies

It’s important to emphasize that a study of this type (called an observational study) cannot conclude that stress-related disorders actually cause autoimmune disease. There could be other explanations for the findings. For example, it is often impossible to identify a precise date that an autoimmune disease or a stress-related disorder began. So, despite the researchers’ requirement that the autoimmune disease be diagnosed well after the stress-related disorder, it’s possible that the autoimmune condition was already present before the stress-related disorder was diagnosed. If that was the case, the stress-related disorder could not have caused the autoimmune disease.

In addition, it’s possible that something other than the stress-related disorder was to blame for the higher rate of autoimmune disease. For example, people who have been through severely stressful circumstances may be more likely to smoke, and smoking has been linked to an increased risk of certain autoimmune diseases, including rheumatoid arthritis and multiple sclerosis.

One more point: this study appears to have included type 2 diabetes among the 41 autoimmune diseases it considered. Although this is the most common type of diabetes (accounting for more than 90% of all cases), it is not considered an autoimmune disease. Different results might have been noted if stricter definitions of autoimmune disease had been applied.

The mystery of autoimmune illness continues

Whether stress or stress-related disorders play an important role remains speculative. Even more important is the question of whether any particular treatment of these stress-induced psychological illnesses can prevent autoimmune disease. I look forward to a clinical trial that examines this fascinating possibility.

Follow me on Twitter @RobShmerling

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