A happy, active, five-year-old little girl woke up one morning and couldn’t walk. She crawled to the stairway hollering for her parents. Her parents ran to her aid trying to figure out what was going on. Could this be growing pains? They rubbed her legs and had her rest, by afternoon she was fine. Through the years, she began to exhibit more symptoms and developed nodules on her wrists and other joints. She played like all of the other children, but sometimes complained of pain. Most mornings began with her parents having to rub her legs to get her going. What could this be? After visiting multiple doctors and specialists, she was diagnosed with Juvenile Rheumatoid Arthritis at the age of eight. She was more tired than most kids and often had a note to stay out of P.E.
To the general population she looked fine; no one would even know something was wrong. She began to miss more school and the more she was absent the harder it was to go. This eventually led to social hardship in addition to her physical ailments. At age sixteen she began to display more signs, including her hands and feet turning purple, extreme chronic fatigue and added pain. By the age of seventeen, she was diagnosed with lupus. There were ups and downs through the years. Years of pain followed by years of remission, then the cycle would begin again.
My story is like many others who have learned that they are faced with an autoimmune disease. I suffered physical pain and fatigue, social issues and daily routines of medication and physical therapy. Today, I still struggle with the everyday nuisances, but all of this made me the person I am today. I successfully finished college and then earned a graduate degree. I held full time jobs, married and became a mother. I am able to live a normal life and so can most children diagnosed with an autoimmune disease. My motto—weak bodies make strong spirits.
When your child shows signs that they may be sick, it is a disheartening feeling for any parent. It is even more frustrating and confusing when you can’t find an answer. Symptoms involved in an autoimmune disease can be vague at first and may subside for some time, but eventually more specific signs surface. Autoimmune diseases are more common than people think, and children can and do get them.
I was fortunate to recently sit down with Andrea L. Sestak, MD PhD, the only exclusive Pediatric Rheumatologist in the state. She recently joined Oklahoma Institute of Allergy, Asthma and Immunology, where she looks forward to continuing to care for children with arthritis, lupus and other autoimmune diseases. Dr. Sestak answers our questions about juvenile autoimmune diseases.
What is an autoimmune disease?
The immune system can get confused about what it is supposed to do. It is supposed to tell which things are foreign and to defend your body against disease, and it is supposed to tell which things belong in the body and leave them alone. In an autoimmune disease, the immune system decides your healthy cells are foreign and attacks those cells. The immune system starts making antibodies to things like DNA and normal proteins and tries to get rid of them. This can damage the joints or the skin, can cause a person to lose hair, have rashes and can attack the kidneys, heart, lungs and other organs.
Are autoimmune diseases common in children?
According to the Arthritis Foundation, almost 300,000 babies and children have arthritis or a rheumatic condition. That’s 1 in 250 children. We have over 3,000 children in Oklahoma with some form of arthritis. If we can recognize it, we can treat it. There are a lot of new treatments allowing children to live normal lives.
What are the most common autoimmune diseases in children?
There are various kinds of arthritis, lupus, juvenile dermatomyositis (JDM), psoriasis, uveitis Crohn’s disease and diabetes. Oklahoma doesn’t always fall into the average demographics due to the high Native American population. For more information on these and other diseases, visit the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov.
How do I know if my child has an autoimmune disease? What are some common signs and symptoms to look for?
In juvenile arthritis, it is common for children to be whiny and limping around in the morning but fine by the afternoon. Young children will most likely have swelling in one or two joints, usually in the legs, and most do not complain of pain. This is different from injuries, which hurt all the time, and growing pains, which are more common at night. It is important to know that children can get arthritis and the most typical type effects only one or two joints. Your child should be evaluated by his primary physician or orthopedist. Unlike 20 years ago, we now have many options to treat whatever is going on so they don’t have to stay sick. Once they start treatment, you usually can’t tell a child with arthritis or lupus from other kids on the playground.
Older children with arthritis often have swelling in their knuckles, pain in their fingers and have difficulty writing, opening jars, tying their shoes or other fine motor tasks, particularly in the morning. This is more like rheumatoid arthritis that adults get.
Children can also get lupus, although the vast majority of children with “lupus antibodies” do not have the disease. Lupus is usually not a subtle disease in a child. The child will be very ill, with fevers, weight loss and extreme fatigue, and typically gets diagnosed in the emergency room or hospital. Characteristically, doctors catch lupus early because the children become ill very quickly and may have only had symptoms for a short time.
Often in hospitals children may have fevers and doctors can’t find the source. This can be systemic arthritis or a number of more rare autoimmune diseases. The only way to know is to see a specialist.
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.