As a parent of a child with myasthenia gravis, it may be difficult to know where to start and how you can best help your child. This part of the MGFA website offers resources to help you successfully support your child with MG. Remember that your child can lead a full, happy and productive life with a little extra help and guidance.
Understanding Your Child’s MG:
Transient neonatal myasthenia: This disorder occurs in 10-15 percent of infants born to mothers with autoimmune MG. Maternal antibodies that cross the placenta in late pregnancy cause transient neonatal myasthenia. Symptoms include a weak cry or suck and generalized weakness at birth. As the maternal antibodies degrade in infant’s body, symptoms gradually disappear, within a few weeks. Infants with transient neonatal myasthenia gravis do not have an increased risk for long-term or future MG.
Congenital myasthenic syndromes (CMS): This term is reserved for a group of uncommon, hereditary disorders of the neuromuscular junction. There are many different types of CMS, each the result of a genetic mutation in a specific protein component of the neuromuscular junction. A thorough diagnostic evaluation is worthwhile in patients with suspected CMS because of the different types and different treatment options.
Juvenile myasthenia gravis (JMG): An autoimmune disorder in which antibodies interfere with nerve to muscle communication causing muscle weakness. Symptoms of weakness develop after exertion and tend to increase as the day progresses. The variability in symptoms can lead to the diagnosis of JMG often after weeks or months of symptoms. On occasion, the symptoms can develop rapidly. Drooping eyelids and/or incomplete movement of the eyes (causing crossing of the eyes and double vision) are frequently the earliest symptoms. However, any skeletal muscle can be involved so other symptoms may include problems chewing, swallowing and speaking clearly, shortness of breath or limb muscle weakness.
To learn more about MG and related disorders, see here.
Diagnosis & Treatment for Children with MG
MG can be diagnosed several ways. When the clinical history and neurologic examination suggest the possibility of MG, the following tests can be used to confirm a diagnosis. Multiple tests may be needed to confirm a diagnosis:
- Blood test: This test looks for antibodies that interfere with the nerve/muscle communication process to receptors on the muscle membrane, such as acetylcholine receptors (AChR) and muscle specific kinase receptors (MuSK).
- Edrophonium test: Edrophonium is a drug that prevents the breakdown of acetylcholine, allowing the clinician to understand muscle response and whether the results are consistent with an MG diagnosis.
- Electromyography (EMG): This tests the electrical connection between motor nerves and the muscles they supply.
- Genetic tests: Genetic tests are performed if congenital myasthenic syndromes (CMS) is suspected
Is there a cure for my child’s MG? Unfortunately, there is no cure for MG. However, treatment has improved significantly over the past 50 years. Your child has good prospects for a full life with proper treatment and care.
A treatment plan for your child will depend on his or her health, medical history, severity of the MG symptoms, and response to medications and therapies. In addition, the anticipated course of the condition and your involvement as a parent should be part of the process. Your child's doctor will work with you and your child to find the right medication or combination of medications. This therapeutic regimen will lessen the symptoms of MG and allow your child to be themselves. It may take some time to find that optimal approach. And, the best approach may change over time. Monitor how well medications are working with your child and your child’s doctor. You may wish to keep a diary or chart of times and effects. For instance, you can write down not only when medication was given but also when it seemed to take effect, when its help began to wane, as well as side effects and any other significant details. In talking with your child’s doctor, your input will be important.
- Symptomatic Treatment: Assuring adequate sleep and planning each day to allow for rest periods between more vigorous levels of activity is an important factor in minimizing symptoms of MG. Optimum nutrition and level of aerobic conditioning (being active enough to be in “shape”) also help individuals with myasthenia function at their best.
- Pyridostigmine: This is the first line therapy for juvenile MG. It provides clinical improvement by prolonging the activity of the body’s natural neuromuscular transmitter, acetylcholine. This oral medication tends to be well tolerated. However, it can have side effects such as abdominal cramps, diarrhea and, in very rare instances, worsening weakness.
- Immune-modulating Treatment: Corticosteroids modulate the immune system and may reduce symptoms for some patients. There are concerns about use of high dose, daily corticosteroids in children. They can lead to side-effects such as weight gain, slowing growth, bone loss, facial changes, mood changes, high blood sugar, high blood pressure and susceptibility to infection.
- Other medications that suppress or moderate the immune system: These medications can be used to avoid long-term use of corticosteroids. The medication which has been used most extensively is azathioprine. Other agents include tacrolimus, cyclosporine, cyclophosphamide and mycophenolate. There are no clinical trials published about the use of these medications for treatment of children with MG. Careful monitoring of children on these medications is required as side effects include liver enzyme elevation, nausea, abdominal pain and bone marrow suppression. These medications can take several months to produce clinical improvement.
- Intravenous Immunoglobulin (IVIG): IV infusions of pooled human antibodies (IVIG) are effective at decreasing the clinical symptoms in many individuals with MG. The clinical improvement is frequently noted within several days to a week and lasts for variable intervals (generally not longer than 4-6 weeks).There is no consensus on the best dosing schedule for using IVIg to treat children with MG. Possible side effects are headache and nausea or less likely aseptic meningitis or rarely renal failure. IVIG therapy is expensive and usually requires preauthorization with third party payers.
- Thymectomy: Surgical removal of the thymus gland. A thymectomy with or without an existing thymoma (tumor, usually benign) has been believed to improve clinical status in adults with MG. Early removal of the thymus in a child with generalized, antibody positive juvenile MG (i.e., within two years from diagnosis) has been associated with better long-term outcomes. The clinical benefit of thymectomy appears over time (long-term). Therefore, thymectomy surgery should not be done on an urgent basis in a clinically ill or weak child as the risks of anesthesia and surgery outweigh the long-term benefit.
What to Expect
Because MG is an uncommon disease, many doctors have never seen a case. Even those who have some experience with MG may only treat a few MG patients. Ideally, you may find it helpful to find a physician, usually a neurologist, who has significant experience with MG. This specialist is most likely part of a major medical center. If that isn’t an option, you may want to work with your physician to learn more about MG. We have a number of resources to help you and your doctor learn more about MG.
As you might imagine or have already experienced, MG is frequently undiagnosed. That means you may have had a long journey to get to this point. Once you have your child’s diagnosis, you will still have many challenges. But you can get through them. Every parent and child has his or her own way of coping. Find those things that help you and your child manage stress. Focus on understanding MG, its treatment, and ways to manage its impact to maintain regular life activities.
- Talk with your child about their illness in an age appropriate way. Don’t deny or hide the problem (which may cause more worry for your child). Stress that he or she can cope with this challenge and that there is help from family, friends, health professionals and others.
- Share with others. Let other people in your life and your child’s life know about his MG and its impact. But share this information in a matter-of-act manner. Help others understand that although they need to be aware of your child’s MG, you, your child and your family are maintaining as normal a lifestyle as possible. Ease any fears or misunderstandings others may have about your child’s MG. For instance, can your child join a sleepover, a party, game, outing, etc.? How can another adult address any challenges?
Managing Daily Life
Look carefully at your child’s energy and strength/weakness patterns. MG is known as a snowflake disease because each person experiences it somewhat differently. You may find it helpful to track his or her patterns. You can use our MyMG app or a helpful worksheet to track energy levels to plan for rest and reduce any stress.
It’s important to keep in mind your child’s safety, and not just when issues arise. In order to be best prepared, see these important educational resources about emergency management, cautionary drugs and other critical information here.
What are the prospects for my child? With proper treatment and care, a child with MG can look forward to a long and fulfilling life.
Important Things to Keep in Mind:
- Work with your child’s doctors to find a therapeutic regimen that works for your child. That includes finding a medication schedule that works with your child’s life.
- Build strong relationships with your child’s teachers, coaches, school nurse and other key adults in his or her life. Help them understand your child’s health challenges and how they can assist in managing his or her challenges. See our helpful guide to aid your child in achieving school success.
- Maintain a healthy lifestyle that includes exercise, nutritious food, positive thinking patterns, problem solving and relaxation, rewarding activities, love and support. See our helpful guide about exercise for a child with MG.
- Connect with others by joining online groups for Parents of Children with MG.
- Learn about helpful resources that can support and guide you and your child. We have a list of helpful resources available.
Make sure to maintain a positive outlook despite the stress MG is causing for you, your child and your family. Although that may be difficult, it will help you cope and maintain a loving and encouraging environment for your child and family. By remaining upbeat, you’ll also reduce stress which can often trigger or increase MG symptoms.