Lupus and Pregnancy
Philip Samuels, MDSteven G. Gabbe, MD
While lupus can have profound effects on both mother and child during pregnancy, most women with lupus can conceive, have a successful pregnancy and a healthy baby. Pregnancy does not seem to affect the long-term course of their lupus. It is very important to remember that later pregnancies may affect lupus differently in the same patient.
There appears to be an increased risk of lupus flares during pregnancy, especially during the days surrounding childbirth. There is also an increased risk of miscarriage in patients with lupus. The miscarriages associated with lupus often occur in the third and fourth months of pregnancy and may not necessarily have any relationship to how mild or severe the mother's other symptoms are at that time. Currently research into possible causes for recurrent miscarriages is focusing on the lupus anticoagulant and the anti-cardiolipin antibody. Such antibodies are found in the blood of approximately fifteen percent of patients with lupus.
It appears that therapy with prednisone, aspirin, heparin, or gamma globulin either alone or used together may help reduce the number of miscarriages in these patients. Pregnant patients with lupus may have an increased chance for a premature delivery. This is due both to spontaneous premature labor and to emergency Caesarean section.
The Caesarean section is done if the mother's condition is deteriorating or the baby is in jeopardy. Patients with lupus may also have an increase in the possibility of having a stillborn child. This is especially true in patients who have severe kidney involvement. Infants bom to mothers with lupus may have rashes on their face, scalp, and chest. These rashes usually disappear by one year of age.
Once in a great while, these babies may develop a congenital heart block. In these cases, the baby's heart beats at a slower rate than normal before birth, and continues to do so after delivery. This disorder is associated with the presence of the anti-Ro (SS-A) antibody in mothers with lupus. If this problem is recognized early, however, most of these babies will do well after birth. Most patients with lupus can have a successful pregnancy. There are certain factors that must be watched and there are certain measures the pregnant patient herself can take to help assure that she has a healthy baby. Most importantly, a patient's lupus should be in clinical remission before conception.
If possible she should try to wait six months after her last flare of lupus before conceiving. If her condition is stable, the patient greatly increases her chances for a normal pregnancy. Before conception, the patient should have blood tests performed for the presence of the anti-Ro antibody, the lupus anticoagulant, and the anti-cardiolipin antibody. If the anti-Ro antibody is present, the patient should be watched closely for the possible development of fetal heart block. If the lupus anticoagulant or anti-cardiolipin antibody is present, the patient should probably receive steroid therapy throughout her pregnancy.
The obstetrician and rheumatologist must work together as a team to help the patient throughout her pregnancy. The patient's blood pressure should be checked frequently. Her kidney function should be checked monthly. Ultrasound exams should be used frequently during pregnancy in a patient with lupus to make certain that the fetus (unborn baby) is growing properly. Ultrasound is a technique which uses high frequency sound waves to photograph the fetus. This test is painless and safe. Another safe test involves use of a fetal heart rate monitor to observe the patterns of the fetal heart rate for 20-40 minutes.
In the last months of pregnancy, this test may be done frequently to assess the condition of the unborn baby. Finally, frequent blood tests will be performed to make certain that there are no flares of the lupus. Although having blood tests performed is a nuisance and is somewhat uncomfortable, it is very important that the doctor watch the level of certain antibodies in the blood during late pregnancy to be assured that the mother's condition is stable.
Upon leaming that they are pregnant, many women react by immediately stopping all medications. This should not be done without consulting both the obstetrician and rheumatologist. Steroids are the mainstay of treating lupus, and they and most medications used to treat lupus cause no serious problems for the fetus. Patients should choose an obstetrician who is familiar with lupus and who feels comfortable treating pregnant patients with this illness.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Tuesday, August 29, 2006
Sex and Lupus
Sex and Lupus
Mary P. Brassell, MA, CRRN
Many couples experience some type of sexual difficulty when one partner has a chronic disease such as lupus. Sexuality may be affected by disease symptoms, medications and/or psychological concerns. Disease symptoms of lupus which may influence sexual activity include: oral ulcers, vaginal ulcers, arthritis, Sjogren's syndrome, and Raynaud's phenomenon. Each of these problems will be discussed in detail. Oral ulcers occur in about 10-15% of people with lupus.
They can interfere with pleasant oral sensations. A prescription mouthwash with antibiotics and/or steroids may be necessary and can help heal the ulcers. Remember, they do not last forever! Vaginal ulcers are present in less than 5% of patients with lupus. They are rarely painful but when they are they can interfere with intercourse. A prescribed steroid cream or other medication can be used to treat them. Alternate forms of sexual expression can also be used until healing has taken place. Joint pains or arthritis that often accompany lupus may respond to warm baths, a few warming up exercises, and taking anti-inflammatory medication an hour before sexual activity. The vaginal dryness associated with Sjogren's syndrome responds well to the use of a water soluble lubricant which is absorbed and does not have to be removed. (Vaseline-like ointments should be avoided since they can encourage infection.) Water soluble lubricants (e.g. K-Y jelly) are available over the counter at drugstores or supermarkets.
People who have Raynaud's phenomenon have a condition in which blood vessels constrict (become narrower) when they are exposed to cold. It can be very painful. Raynaud's can cause fingers and toes to change color (first white, then blue, then red). Here are some solutions: Avoid having sex in an air conditioned room. Wear socks if your feet are sensitive to cold. Try a warm bath (not hot) prior to sexual activity as it will help open the blood vessels. During sex, blood pools in the genital area and less blood goes to the fingers and toes. Take the bottom position - it helps avoid the pressure on hands and feet that can further reduce blood flow. Medications can certainly influence sex life. Tranquilizers (antianxiety agents), anti-hypertensives (drugs that lower high blood pressure), and corticosteroids (prednisone) can affect both sexual desire (libido) and performance.
Some anti-hypertensives decrease libido in men and women as well as produce temporary impotence. It is best to discuss these drugs with your doctor, who may be able to prescribe a different blood pressure drug that won't interfere with sexual performance. A small percentage of men and women have experienced libido changes while on steroids. If you experience any of these changes, talk with your doctor. Psychological factors can also have a powerful influence on a satisfying sex life. If the person with lupus has developed low self esteem, unhappiness about the way their body looks, feelings of worthlessness, depression, fatigue, and feelings of inadequacy, the sexual relationship will certainly be affected. The patient may withdraw from his/her partner.
The healthy partner may feel that this withdrawal means rejection and the loss of affection and love. If communication does not occur, the relationship may be in serious jeopardy. Sexual pleasure is an important aspect of any relationship. Some studies have reported that arthritis patients are free from joint pain for up to six hours after intercourse. Sex, therefore, seems to be therapeutic. Even if intercourse is not possible, other forms of sexual expression such as cuddling, holding, stroking, kissing, and closeness are all manifestations of sexual affection that can help reinforce your sense of self-worth and desirability.
Many publications contain various suggestions for different methods of sexual expression. The Arthritis Foundation has a publication titled "Living and Loving with Arthritis". It costs less than a dollar and can be obtained from the local branch of the Arthritis Foundation. This booklet contains information about sexual expression, illustrations of comfortable positions to assume during sexual activity, and some sound advice about coping with sexual challenges. Suggestions for improving a sexual relationship are offered. Sexuality is a part of life. It is a normal and usual activity of daily living. Whether sexual problems are physical or emotional or both, willingness by botb partners to discuss and search for solutions to sexual problems is essential.
Help in reaching solutions can be sought from a physician, from nurses in the field of arthritis and lupus, from psychologists, and/or from sex therapists. infon-nation is readily available at low cost. All that is required is that the patient and partner find the necessary person or publication. Sexuality is best thought of as another form of communication that helps couples enjoy each other and deepen their intimacy in a loving relationship. Sometimes if this communication does not happen, other parts of the relationship will suffer. Solutions can be achieved with a little effort by both patient and partner, but there must be an effort!
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Mary P. Brassell, MA, CRRN
Many couples experience some type of sexual difficulty when one partner has a chronic disease such as lupus. Sexuality may be affected by disease symptoms, medications and/or psychological concerns. Disease symptoms of lupus which may influence sexual activity include: oral ulcers, vaginal ulcers, arthritis, Sjogren's syndrome, and Raynaud's phenomenon. Each of these problems will be discussed in detail. Oral ulcers occur in about 10-15% of people with lupus.
They can interfere with pleasant oral sensations. A prescription mouthwash with antibiotics and/or steroids may be necessary and can help heal the ulcers. Remember, they do not last forever! Vaginal ulcers are present in less than 5% of patients with lupus. They are rarely painful but when they are they can interfere with intercourse. A prescribed steroid cream or other medication can be used to treat them. Alternate forms of sexual expression can also be used until healing has taken place. Joint pains or arthritis that often accompany lupus may respond to warm baths, a few warming up exercises, and taking anti-inflammatory medication an hour before sexual activity. The vaginal dryness associated with Sjogren's syndrome responds well to the use of a water soluble lubricant which is absorbed and does not have to be removed. (Vaseline-like ointments should be avoided since they can encourage infection.) Water soluble lubricants (e.g. K-Y jelly) are available over the counter at drugstores or supermarkets.
People who have Raynaud's phenomenon have a condition in which blood vessels constrict (become narrower) when they are exposed to cold. It can be very painful. Raynaud's can cause fingers and toes to change color (first white, then blue, then red). Here are some solutions: Avoid having sex in an air conditioned room. Wear socks if your feet are sensitive to cold. Try a warm bath (not hot) prior to sexual activity as it will help open the blood vessels. During sex, blood pools in the genital area and less blood goes to the fingers and toes. Take the bottom position - it helps avoid the pressure on hands and feet that can further reduce blood flow. Medications can certainly influence sex life. Tranquilizers (antianxiety agents), anti-hypertensives (drugs that lower high blood pressure), and corticosteroids (prednisone) can affect both sexual desire (libido) and performance.
Some anti-hypertensives decrease libido in men and women as well as produce temporary impotence. It is best to discuss these drugs with your doctor, who may be able to prescribe a different blood pressure drug that won't interfere with sexual performance. A small percentage of men and women have experienced libido changes while on steroids. If you experience any of these changes, talk with your doctor. Psychological factors can also have a powerful influence on a satisfying sex life. If the person with lupus has developed low self esteem, unhappiness about the way their body looks, feelings of worthlessness, depression, fatigue, and feelings of inadequacy, the sexual relationship will certainly be affected. The patient may withdraw from his/her partner.
The healthy partner may feel that this withdrawal means rejection and the loss of affection and love. If communication does not occur, the relationship may be in serious jeopardy. Sexual pleasure is an important aspect of any relationship. Some studies have reported that arthritis patients are free from joint pain for up to six hours after intercourse. Sex, therefore, seems to be therapeutic. Even if intercourse is not possible, other forms of sexual expression such as cuddling, holding, stroking, kissing, and closeness are all manifestations of sexual affection that can help reinforce your sense of self-worth and desirability.
Many publications contain various suggestions for different methods of sexual expression. The Arthritis Foundation has a publication titled "Living and Loving with Arthritis". It costs less than a dollar and can be obtained from the local branch of the Arthritis Foundation. This booklet contains information about sexual expression, illustrations of comfortable positions to assume during sexual activity, and some sound advice about coping with sexual challenges. Suggestions for improving a sexual relationship are offered. Sexuality is a part of life. It is a normal and usual activity of daily living. Whether sexual problems are physical or emotional or both, willingness by botb partners to discuss and search for solutions to sexual problems is essential.
Help in reaching solutions can be sought from a physician, from nurses in the field of arthritis and lupus, from psychologists, and/or from sex therapists. infon-nation is readily available at low cost. All that is required is that the patient and partner find the necessary person or publication. Sexuality is best thought of as another form of communication that helps couples enjoy each other and deepen their intimacy in a loving relationship. Sometimes if this communication does not happen, other parts of the relationship will suffer. Solutions can be achieved with a little effort by both patient and partner, but there must be an effort!
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Tuesday, August 01, 2006
Rehabilitation in Lupus
Rehabilitation in Lupus
Bertram Greenspun, DO
Rehabilitation medicine is the field of medicine that concerns itself not only with how the disease process has affected the individual but also with how the disease has changed the person's ability to maintain the lifestyle and roles in life which they had before the disease started.
The rehabilitation team concentrates on how to improve the person's functioning and independence to the highest possible level. Systemic Lupus Erythematosus (SLE) at times presents problems that can be helped by an individualized rehabilitation program. Among the body systems that can be affected by lupus (and may be helped by rehabilitation) are the central nervous system (CNS), the musculoskeletal system (muscles, bones and joints), and the vascular system (blood vessels).
The CNS can be involved in a variety of ways. Patients who develop stroke-like syndromes or problems of the spinal cord usually require an in-patient program in a comprehensive rehabilitation center. These problems often result in weakness of one or both arms or legs. Weakness can be so profound that it may result in paralysis. Under such circumstances, passive range of motion (ROM) exercises should be started by the physical therapist (PT). Family and friends may also be instructed by the physical therapist to perform ROM exercises for the patient. These exercises are done without the patient having to do any of the work. Since some degree of strength almost always returns when the stroke or the spinal cord damage resolves, it is vital not to allow contractures to develop.
Contractures happen when the joints are allowed to stiffen to the point where they will be unable to bend. Should this occur, even if muscle power returns it will do no good unless the stiffness is reduced or eliminated. This can take a very long time and even require surgery. It is much wiser and easier to prevent contractures in the first place than it is to correct them after the fact. As the patient improves, he/she can move the joint along with the physical therapist. Then the exercise is known as active-assistive ROM. When the patient can move the joint through the entire ROM, he/she no longer needs the assistance of another person and is instructed on how to do regular, active ROM exercises independently.
In addition to ROM exercises, strengthening exercises can be started under proper supervision as soon as is medically possible. The strengthening program should begin at a low intensity that is well within the capability of the patient. It is increased only gradually and slowly. The patient must learn to "listen" to his/her body. This means that if muscle pain or fatigue lasts for more than an hour to an hour and a half after a session, the level of exercise intensity should be temporarily reduced. if the discomfort or fatigue continues after each session the physician who prescribed the program should be notified.
Too much exercise, done too quickly, can easily make the situation worse. If the weakness is associated with acute inflammatory joint pain, isometric exercises can be helpful. Isometric exercises involve contracting the muscles without moving the involved joint. In this way strength can be maintained without triggering the intense pain associated with moving an acutely inflamed joint. Since isometric exercises can cause the blood pressure to rise they should be performed cautiously and without holding the breath, especially in the individual with hypertension. Almost all patients with lupus will, at some point in the disease process, have joint pain. There is often associated morning stiffness and joint swelling. Tenderness and painful movement are common. Deformities may result. Most of these problems can be dealt with on an out-patient basis.
An early morning shower will frequently shorten the duration of morning stiffness. Moist heat is quite helpful for most joint problems and is used prior to ROM exercises. This can be provided by using an inexpensive hydrocollator pack (a wan-n, moistened, sand-filled canvas bag). The moist heat helps to prevent or reduce joint pain caused by motion. For chronic pain, deep heat, such as is provided by ultrasound, can be applied by a PT.
For acute, severe joint pain, ice is most helpful. Bed rest is occasionally prescribed for widespread severe pain. In such cases, it is especially important to properly position the patient in bed to avoid the development of contractures of the joints. One of the most common mistakes is to put pillows under the knees. This forces the knees into a bent position and, along with them, the hips. To imagine the difficulties this can cause, try walking with your hips and knees bent. Both musculoskeletal and CNS manifestations can lead to problems in performing the activities of daily living (ADL) such as dressing, bathing, toileting, etc. An occupational therapist (OT) can be most helpful in suggesting ways to solve these problems.
The OT can provide tools such as button hooks and long-handled sponges to make these activities easier, and can fit splints to allow painful hands and arms to rest while keeping them positioned properly. The OT can educate the patient in joint conservation techniques (ways to protect the joints yet still get the task done). The OT can also aid in the selection of devices to make living at home less difficult (tub benches, raised toilet seats, stair glides, etc.) and can help evaluate the home environment from the point of view of the patient's safety. If mobility has become a problem as a result of joint or CNS involvement, the PT teaches transfer techniques (bed to chair, sit to stand,etc.) and ambulation training, including going up and down stairs. The physical therapist also teaches patients to make proper use of assistive devices such as canes and crutches and helps the patient to adapt to leg braces and splints.
As a result of lupus vasculitis (inflammation of the blood vessels), patients may develop ulcerations of the skin. Special exercises can then be used to help improve circulation and whirlpool treatments can be given to clean the ulcers by removing dead tissue. Rarely, as a result of ulcerations of the feet or ankles, or as a result of blood clots in the major leg arteries, amputation of part of a leg may become necessary.
There has been dramatic improvement in prosthetic (artificial) feet in the last three to four years, allowing many more normal activities such as running and jumping, and materials are now available that result in a much lighter limb. In each state, there is a government office concerned with helping individuals with disabilities obtain training or education so that they can return to gainful employment if their disability prevents them from resuming their previous vocation. This office is usually known as the Office of Vocational Rehabilitation. Social workers can be most helpful in directing people with lupus-related disabilities to the appropriate office or case worker.
The social worker is familiar with the many resources that can help the person with lupus obtain a wide variety of services. Social workers are available in medical clinics, hospitals and social agencies and are members of all rehabilitation teams. If lupus patients have to be hospitalized in a rehabilitation center they will encounter physicians responsible for directing their rehabilitative care. Such physicians are specialists in Physical Medicine and Rehabilitation and are called "physiatrists". In addition to the PT, the OT and the social worker, the rehabilitation team usually includes a number of other professionals. These are a rehabilitation nurse (who has had special training in working with patients disabled by different diseases) a psychiatrist and/or psychologist (to help with the emotional problems that may be present), a recreational therapist (to get patients involved in activities that they may have enjoyed previously or to introduce new interesting activities that make them aware that life can still be enjoyed) and a speech therapist (to help in problems with language or with swallowing difficulties). As well as working with the patient, all members of the rehabilitation team work with the patient's family and friends so that they know what to do and what not to do, when the patient goes home. In summary, the primary purpose of any rehabilitation program is to improve the functional independence of the individual.
Most of the patients requiring a rehabilitation program can be treated in an out-patient setting or at home. Only a small minority will require an intensive in-patient program. While no patients are cured, almost all can be helped.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Bertram Greenspun, DO
Rehabilitation medicine is the field of medicine that concerns itself not only with how the disease process has affected the individual but also with how the disease has changed the person's ability to maintain the lifestyle and roles in life which they had before the disease started.
The rehabilitation team concentrates on how to improve the person's functioning and independence to the highest possible level. Systemic Lupus Erythematosus (SLE) at times presents problems that can be helped by an individualized rehabilitation program. Among the body systems that can be affected by lupus (and may be helped by rehabilitation) are the central nervous system (CNS), the musculoskeletal system (muscles, bones and joints), and the vascular system (blood vessels).
The CNS can be involved in a variety of ways. Patients who develop stroke-like syndromes or problems of the spinal cord usually require an in-patient program in a comprehensive rehabilitation center. These problems often result in weakness of one or both arms or legs. Weakness can be so profound that it may result in paralysis. Under such circumstances, passive range of motion (ROM) exercises should be started by the physical therapist (PT). Family and friends may also be instructed by the physical therapist to perform ROM exercises for the patient. These exercises are done without the patient having to do any of the work. Since some degree of strength almost always returns when the stroke or the spinal cord damage resolves, it is vital not to allow contractures to develop.
Contractures happen when the joints are allowed to stiffen to the point where they will be unable to bend. Should this occur, even if muscle power returns it will do no good unless the stiffness is reduced or eliminated. This can take a very long time and even require surgery. It is much wiser and easier to prevent contractures in the first place than it is to correct them after the fact. As the patient improves, he/she can move the joint along with the physical therapist. Then the exercise is known as active-assistive ROM. When the patient can move the joint through the entire ROM, he/she no longer needs the assistance of another person and is instructed on how to do regular, active ROM exercises independently.
In addition to ROM exercises, strengthening exercises can be started under proper supervision as soon as is medically possible. The strengthening program should begin at a low intensity that is well within the capability of the patient. It is increased only gradually and slowly. The patient must learn to "listen" to his/her body. This means that if muscle pain or fatigue lasts for more than an hour to an hour and a half after a session, the level of exercise intensity should be temporarily reduced. if the discomfort or fatigue continues after each session the physician who prescribed the program should be notified.
Too much exercise, done too quickly, can easily make the situation worse. If the weakness is associated with acute inflammatory joint pain, isometric exercises can be helpful. Isometric exercises involve contracting the muscles without moving the involved joint. In this way strength can be maintained without triggering the intense pain associated with moving an acutely inflamed joint. Since isometric exercises can cause the blood pressure to rise they should be performed cautiously and without holding the breath, especially in the individual with hypertension. Almost all patients with lupus will, at some point in the disease process, have joint pain. There is often associated morning stiffness and joint swelling. Tenderness and painful movement are common. Deformities may result. Most of these problems can be dealt with on an out-patient basis.
An early morning shower will frequently shorten the duration of morning stiffness. Moist heat is quite helpful for most joint problems and is used prior to ROM exercises. This can be provided by using an inexpensive hydrocollator pack (a wan-n, moistened, sand-filled canvas bag). The moist heat helps to prevent or reduce joint pain caused by motion. For chronic pain, deep heat, such as is provided by ultrasound, can be applied by a PT.
For acute, severe joint pain, ice is most helpful. Bed rest is occasionally prescribed for widespread severe pain. In such cases, it is especially important to properly position the patient in bed to avoid the development of contractures of the joints. One of the most common mistakes is to put pillows under the knees. This forces the knees into a bent position and, along with them, the hips. To imagine the difficulties this can cause, try walking with your hips and knees bent. Both musculoskeletal and CNS manifestations can lead to problems in performing the activities of daily living (ADL) such as dressing, bathing, toileting, etc. An occupational therapist (OT) can be most helpful in suggesting ways to solve these problems.
The OT can provide tools such as button hooks and long-handled sponges to make these activities easier, and can fit splints to allow painful hands and arms to rest while keeping them positioned properly. The OT can educate the patient in joint conservation techniques (ways to protect the joints yet still get the task done). The OT can also aid in the selection of devices to make living at home less difficult (tub benches, raised toilet seats, stair glides, etc.) and can help evaluate the home environment from the point of view of the patient's safety. If mobility has become a problem as a result of joint or CNS involvement, the PT teaches transfer techniques (bed to chair, sit to stand,etc.) and ambulation training, including going up and down stairs. The physical therapist also teaches patients to make proper use of assistive devices such as canes and crutches and helps the patient to adapt to leg braces and splints.
As a result of lupus vasculitis (inflammation of the blood vessels), patients may develop ulcerations of the skin. Special exercises can then be used to help improve circulation and whirlpool treatments can be given to clean the ulcers by removing dead tissue. Rarely, as a result of ulcerations of the feet or ankles, or as a result of blood clots in the major leg arteries, amputation of part of a leg may become necessary.
There has been dramatic improvement in prosthetic (artificial) feet in the last three to four years, allowing many more normal activities such as running and jumping, and materials are now available that result in a much lighter limb. In each state, there is a government office concerned with helping individuals with disabilities obtain training or education so that they can return to gainful employment if their disability prevents them from resuming their previous vocation. This office is usually known as the Office of Vocational Rehabilitation. Social workers can be most helpful in directing people with lupus-related disabilities to the appropriate office or case worker.
The social worker is familiar with the many resources that can help the person with lupus obtain a wide variety of services. Social workers are available in medical clinics, hospitals and social agencies and are members of all rehabilitation teams. If lupus patients have to be hospitalized in a rehabilitation center they will encounter physicians responsible for directing their rehabilitative care. Such physicians are specialists in Physical Medicine and Rehabilitation and are called "physiatrists". In addition to the PT, the OT and the social worker, the rehabilitation team usually includes a number of other professionals. These are a rehabilitation nurse (who has had special training in working with patients disabled by different diseases) a psychiatrist and/or psychologist (to help with the emotional problems that may be present), a recreational therapist (to get patients involved in activities that they may have enjoyed previously or to introduce new interesting activities that make them aware that life can still be enjoyed) and a speech therapist (to help in problems with language or with swallowing difficulties). As well as working with the patient, all members of the rehabilitation team work with the patient's family and friends so that they know what to do and what not to do, when the patient goes home. In summary, the primary purpose of any rehabilitation program is to improve the functional independence of the individual.
Most of the patients requiring a rehabilitation program can be treated in an out-patient setting or at home. Only a small minority will require an intensive in-patient program. While no patients are cured, almost all can be helped.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Lupus in Childhood
Lupus in Childhood
Phyllis Slutsky, MEd, RNBarbara E. Ostrov, MD
About 20-25% of all lupus occurs in children. While the exact number of cases is not known, it is not a rare disorder. Girls have lupus about three to seven times more often than boys. Research is being done to study many possible causes of lupus.
Several studies have shown that there is a tendency for lupus to run in families. It is known that there are certain inherited factors called HLA types which make a person more likely to develop lupus. (See Chapter 4.) There is also an inherited lack of immune system proteins (serum complements or immunoglobulins) which increase the risk for developing lupus in some people.
When a susceptible person is exposed to a "trigger" such as a virus or other environmental factor, lupus can develop. A particular kind of lupus may develop in infants of mothers who have SLE. This is called "neonatal lupus" and is associated with an anti-Ro antibody in the mother. An infant with neonatal lupus may have a rash on the face, scalp, or chest. Very rarely, these infants may also be born with an abnormally slow heart rhythm (congenital heart block).
During the first six months to one year, the rash disappears but the slow heart rhythm can be serious and may require the placement of a pacemaker. Systemic lupus erythematosus in childhood can range from mild to severe and affects each individual differently. The usual course of lupus includes periods of "flare-ups" (when symptoms are active) and remissions (when symptoms go away).
Stressors such as infections (which may be more frequent in childhood) and hormonal changes may lead to a flare of symptoms. This may explain why lupus is more common in girls after puberty and may flare up during menstruation and pregnancy. In children, as in adults, sun exposure can bring on symptoms of lupus. Serious complications of lupus are most common when organs such as kidneys, heart or the central nervous system are involved.
The most common time to find out what body systems are involved is at the time that lupus is first diagnosed. As time goes on, the likelihood decreases that new body systems will become involved. Diagnosing lupus involves a thorough physical examination and often many laboratory tests.
There are guidelines which have been developed by the American College of Rheumatology which are used to diagnose lupus. (See Table 1) Four of their eleven selected symptoms and/or laboratory tests (criteria) must be present to make a definite diagnosis. Symptoms of lupus may start in a variety of ways.
A child may be very ill or have only mild symptoms. The most common symptoms in children are rash, fever, fatigue, and joint pain and swelling. Decreased appetite and weight loss are particularly common in children during the active phase of the disease. Inflammation of the kidneys (nephritis), inflammation of the heart covering (pericarditis), enlargement of the liver and spleen, and a low blood count (cytopenia) may be more frequent in children than in adults. Many children have rashes that can appear on the face or anywhere on the body. Ulcers of the mouth and nose are common in children with lupus. Hair loss (alopecia) may range from gradual thinning and change in texture, to loss of large amounts of hair when combing.
Central nervous system symptoms (affecting the brain and spinal column) can occur and may cause headaches, seizures, or a change in memory or thinking ability. Visual changes can also occur, making it important to have frequent checks by an eye doctor. Changes in mood or behavior can occur in children with lupus. These can be an understandable reaction to having an illness. Feelings of sadness or irritability do not necessarily mean there is central nervous system involvement. However, it is important to keep a careful watch on a child's behavior to decide if these things are caused by the lupus or are due to the child's reaction to the illness.
Diagnostic tests such as spinal taps, EEGS, and brain x-rays and scans can be helpful in deciding what is caused by lupus and what is due to psychosocial causes. The kidneys can be affected by lupus. A urinalysis may reveal problems which can then be further investigated with other tests. It is common to collect urine for 24 hours to do further studies. A kidney biopsy is sometimes necessary to determine how seriously the kidney is affected.
This test is used as a guideline for treatment and for monitoring changes over time. The treatment of lupus depends on what part of the body is affected. Being careful about sun exposure is important for all children. Planning the child's schedule to avoid exposure during the peak time of 12:00-3:00 P.M. each day is recommended. Children should be included in working out the schedule so that they understand the importance of any restrictions and will be more willing to cooperate. Another important aspect of treatment is to be alert for any signs of a developing infection.
Families should be aware that fever and increased tiredness or shortness of breath could be a sign of either a "flare-up" of lupus or possibly an infection. The doctor may need to evaluate the child when fever develops. There are a variety of medications used to treat lupus. Many children are treated with a non-steroidal anti-inflammatory drug (NSAID) which helps reduce inflammation and joint pain. Antimalarial drugs such as Plaquenil are sometimes used to treat the skin rashes of lupus. Steroids are sometimes necessary to treat lupus. The goal when using steroids is to use the lowest possible amount needed.
As symptoms improve, smaller and smaller doses are gradually given until the medication can be stopped altogether. When high doses of steroids are used over a long period of time, side effects can occur such as eye problems, and a decrease in the growth of the child. Giving steroids every other day helps to lower the chances of harmful side effects. Some other drugs used mainly when kidneys are affected by lupus are Cytoxan and Imuran. These work to control the reaction of a child's immune system so that it causes less harmful effects on the body. Recent studies have shown that these drugs can be used safely in children and can control the more serious effects of lupus on internal organs. A chronic illness like lupus will of course have a large effect on a child's life.
Often a child misses school during "flares". It is important to make contact with the school as soon as possible and stay in contact during the absent period. A school counselor or nurse can make arrangements to help the child. Some children may need home or hospital tutoring while others may be able to do make-up work on their own. This depends on how sick they are and how long they will be out of school. Because lupus symptoms come and go, arrangements may need to be made before a child is sick so that tutoring can start right away if needed. Many rheumatology centers that treat lupus have a health care team that includes a social worker and a nurse who can help the family with getting services needed for their child. Often children with lupus (like those with other chronic conditions) should have an Individualized Education Plan (IEP) .
This is an evaluation of all of the child's educational, psychosocial and physical needs which is done by a "study team" in each school district. The IEP identifies what each child needs in order to function well at school. Every child in the USA is entitled to this plan due to a government law (PL#94 -142). Children with lupus are also entitled to vocational planning services in order to prepare for school or job training for their future employment.
Each state has an Office of Vocational Rehabilitation (OVR) which offers career counseling that takes into account a child's physical abilities. Any illness in a family member is likely to cause reactions in other members of the family. These can help or hurt successful coping. There is often an increased burden on the family when caring for a sick child. This can also mean lost work time for parents and added financial problems due to medical expenses. Studies have been done to measure the effects on a family of a child with chronic illness. The families that coped best were those that did not place their child in a sick role, and so did not limit the child's activities in daily life.
Families based around a good quality marriage, and with good support from family, friends and/or religious groups cope better with a chronic illness. Support groups for parents of children with lupus exist through the AJAO (American juvenile Arthritis Organization) which is a part of the Arthritis Foundation. The large number of teenage and young adult women with lupus raises some special concerns. A major problem for teenagers is the change in appearance, often on the face, caused by lupus.
The characteristic rash and puffiness of lupus, or the acne caused by steroids cause the child to wonder, "How do I look to the world?" It is important to discuss this as openly as possible with the teenager, as these issues are a major source of stress and worry. Concerns about sexuality and pregnancy are also often uppermost in teenagers' minds when they become ill. Standard oral contraceptives which contain the hormone estrogen may cause an increase in symptoms of lupus and therefore are not recommended.
Sometimes the mini-pill, which contains only the hormone progesterone, is safe in lupus patients. Diaphragms and condoms are fine, and all of these options should be reviewed and discussed. It is recommended that a woman not become pregnant during an active period of lupus. Lupus has not been found to affect the ability to get pregnant, but miscarriages are more common when the disease is active. It is very possible to become pregnant and have a healthy baby, but careful planning with the doctor for the best time to get pregnant is advised. There are many obstetricians available who specialize in "high risk" pregnancies. Because of the many issues and adjustments necessary for a teenager with lupus, individual counseling may be necessary and can be helpful to some adolescents.
Support groups are an ideal way for teens to get the peer support and acceptance they need. Teens who attend these groups report a decrease in feelings of isolation and are better able to accept their illness. There has been a remarkable improvement in the prognosis of children with lupus during the past thirty years. This has happened due to improvements in diagnosis and treatment. Most importantly, children and their families need to seek careful and competent medical treatment and to cultivate the support of their health care team, their school and their community.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
Phyllis Slutsky, MEd, RNBarbara E. Ostrov, MD
About 20-25% of all lupus occurs in children. While the exact number of cases is not known, it is not a rare disorder. Girls have lupus about three to seven times more often than boys. Research is being done to study many possible causes of lupus.
Several studies have shown that there is a tendency for lupus to run in families. It is known that there are certain inherited factors called HLA types which make a person more likely to develop lupus. (See Chapter 4.) There is also an inherited lack of immune system proteins (serum complements or immunoglobulins) which increase the risk for developing lupus in some people.
When a susceptible person is exposed to a "trigger" such as a virus or other environmental factor, lupus can develop. A particular kind of lupus may develop in infants of mothers who have SLE. This is called "neonatal lupus" and is associated with an anti-Ro antibody in the mother. An infant with neonatal lupus may have a rash on the face, scalp, or chest. Very rarely, these infants may also be born with an abnormally slow heart rhythm (congenital heart block).
During the first six months to one year, the rash disappears but the slow heart rhythm can be serious and may require the placement of a pacemaker. Systemic lupus erythematosus in childhood can range from mild to severe and affects each individual differently. The usual course of lupus includes periods of "flare-ups" (when symptoms are active) and remissions (when symptoms go away).
Stressors such as infections (which may be more frequent in childhood) and hormonal changes may lead to a flare of symptoms. This may explain why lupus is more common in girls after puberty and may flare up during menstruation and pregnancy. In children, as in adults, sun exposure can bring on symptoms of lupus. Serious complications of lupus are most common when organs such as kidneys, heart or the central nervous system are involved.
The most common time to find out what body systems are involved is at the time that lupus is first diagnosed. As time goes on, the likelihood decreases that new body systems will become involved. Diagnosing lupus involves a thorough physical examination and often many laboratory tests.
There are guidelines which have been developed by the American College of Rheumatology which are used to diagnose lupus. (See Table 1) Four of their eleven selected symptoms and/or laboratory tests (criteria) must be present to make a definite diagnosis. Symptoms of lupus may start in a variety of ways.
A child may be very ill or have only mild symptoms. The most common symptoms in children are rash, fever, fatigue, and joint pain and swelling. Decreased appetite and weight loss are particularly common in children during the active phase of the disease. Inflammation of the kidneys (nephritis), inflammation of the heart covering (pericarditis), enlargement of the liver and spleen, and a low blood count (cytopenia) may be more frequent in children than in adults. Many children have rashes that can appear on the face or anywhere on the body. Ulcers of the mouth and nose are common in children with lupus. Hair loss (alopecia) may range from gradual thinning and change in texture, to loss of large amounts of hair when combing.
Central nervous system symptoms (affecting the brain and spinal column) can occur and may cause headaches, seizures, or a change in memory or thinking ability. Visual changes can also occur, making it important to have frequent checks by an eye doctor. Changes in mood or behavior can occur in children with lupus. These can be an understandable reaction to having an illness. Feelings of sadness or irritability do not necessarily mean there is central nervous system involvement. However, it is important to keep a careful watch on a child's behavior to decide if these things are caused by the lupus or are due to the child's reaction to the illness.
Diagnostic tests such as spinal taps, EEGS, and brain x-rays and scans can be helpful in deciding what is caused by lupus and what is due to psychosocial causes. The kidneys can be affected by lupus. A urinalysis may reveal problems which can then be further investigated with other tests. It is common to collect urine for 24 hours to do further studies. A kidney biopsy is sometimes necessary to determine how seriously the kidney is affected.
This test is used as a guideline for treatment and for monitoring changes over time. The treatment of lupus depends on what part of the body is affected. Being careful about sun exposure is important for all children. Planning the child's schedule to avoid exposure during the peak time of 12:00-3:00 P.M. each day is recommended. Children should be included in working out the schedule so that they understand the importance of any restrictions and will be more willing to cooperate. Another important aspect of treatment is to be alert for any signs of a developing infection.
Families should be aware that fever and increased tiredness or shortness of breath could be a sign of either a "flare-up" of lupus or possibly an infection. The doctor may need to evaluate the child when fever develops. There are a variety of medications used to treat lupus. Many children are treated with a non-steroidal anti-inflammatory drug (NSAID) which helps reduce inflammation and joint pain. Antimalarial drugs such as Plaquenil are sometimes used to treat the skin rashes of lupus. Steroids are sometimes necessary to treat lupus. The goal when using steroids is to use the lowest possible amount needed.
As symptoms improve, smaller and smaller doses are gradually given until the medication can be stopped altogether. When high doses of steroids are used over a long period of time, side effects can occur such as eye problems, and a decrease in the growth of the child. Giving steroids every other day helps to lower the chances of harmful side effects. Some other drugs used mainly when kidneys are affected by lupus are Cytoxan and Imuran. These work to control the reaction of a child's immune system so that it causes less harmful effects on the body. Recent studies have shown that these drugs can be used safely in children and can control the more serious effects of lupus on internal organs. A chronic illness like lupus will of course have a large effect on a child's life.
Often a child misses school during "flares". It is important to make contact with the school as soon as possible and stay in contact during the absent period. A school counselor or nurse can make arrangements to help the child. Some children may need home or hospital tutoring while others may be able to do make-up work on their own. This depends on how sick they are and how long they will be out of school. Because lupus symptoms come and go, arrangements may need to be made before a child is sick so that tutoring can start right away if needed. Many rheumatology centers that treat lupus have a health care team that includes a social worker and a nurse who can help the family with getting services needed for their child. Often children with lupus (like those with other chronic conditions) should have an Individualized Education Plan (IEP) .
This is an evaluation of all of the child's educational, psychosocial and physical needs which is done by a "study team" in each school district. The IEP identifies what each child needs in order to function well at school. Every child in the USA is entitled to this plan due to a government law (PL#94 -142). Children with lupus are also entitled to vocational planning services in order to prepare for school or job training for their future employment.
Each state has an Office of Vocational Rehabilitation (OVR) which offers career counseling that takes into account a child's physical abilities. Any illness in a family member is likely to cause reactions in other members of the family. These can help or hurt successful coping. There is often an increased burden on the family when caring for a sick child. This can also mean lost work time for parents and added financial problems due to medical expenses. Studies have been done to measure the effects on a family of a child with chronic illness. The families that coped best were those that did not place their child in a sick role, and so did not limit the child's activities in daily life.
Families based around a good quality marriage, and with good support from family, friends and/or religious groups cope better with a chronic illness. Support groups for parents of children with lupus exist through the AJAO (American juvenile Arthritis Organization) which is a part of the Arthritis Foundation. The large number of teenage and young adult women with lupus raises some special concerns. A major problem for teenagers is the change in appearance, often on the face, caused by lupus.
The characteristic rash and puffiness of lupus, or the acne caused by steroids cause the child to wonder, "How do I look to the world?" It is important to discuss this as openly as possible with the teenager, as these issues are a major source of stress and worry. Concerns about sexuality and pregnancy are also often uppermost in teenagers' minds when they become ill. Standard oral contraceptives which contain the hormone estrogen may cause an increase in symptoms of lupus and therefore are not recommended.
Sometimes the mini-pill, which contains only the hormone progesterone, is safe in lupus patients. Diaphragms and condoms are fine, and all of these options should be reviewed and discussed. It is recommended that a woman not become pregnant during an active period of lupus. Lupus has not been found to affect the ability to get pregnant, but miscarriages are more common when the disease is active. It is very possible to become pregnant and have a healthy baby, but careful planning with the doctor for the best time to get pregnant is advised. There are many obstetricians available who specialize in "high risk" pregnancies. Because of the many issues and adjustments necessary for a teenager with lupus, individual counseling may be necessary and can be helpful to some adolescents.
Support groups are an ideal way for teens to get the peer support and acceptance they need. Teens who attend these groups report a decrease in feelings of isolation and are better able to accept their illness. There has been a remarkable improvement in the prognosis of children with lupus during the past thirty years. This has happened due to improvements in diagnosis and treatment. Most importantly, children and their families need to seek careful and competent medical treatment and to cultivate the support of their health care team, their school and their community.
=========================================================== This information is for"informational purposes" and is not meant to be used for medical diagnosis. Alwaysconsult your physician on matters such as this.
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