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There are many ways you can help children and their families get the care they need.
A diagnosis of juvenile myastheniagravis (JMG) can be worrisome. You are probably wondering where to go from here and how to make sure your child receives the best possible care.
All of the members of the Neuromuscular Center at Boston Children's Hospital are here to help. Our specialists are dedicated to anticipating any complications that your child may experience from his disease and developing the best therapeutic plans to manage them.
Although JMG can't be cured, there are several treatment options that are effective in strengthening muscles, managing symptoms and prolonging symptom-free periods.
Depending on his specific needs, your child may receive one or a combination of a few different treatments:
What are the side effects of steroids?
Children who are on steroids should be carefully monitored by a physician. They may experience:
Thymectomy is the surgicalremoval of the thymus gland in the chest. The thymus has been associated with production of the harmful antibodies, though the exact mechanism by which the thymus promotes this is unclear.
Will my child need surgery?
Children with generalized myasthenias who are not responding to medical treatments, or who are heavily dependent on medication, maybe eligible for a thymectomy (surgical removal of the thymus). In some cases, children who undergo the procedure improve significantly.
If your child has just been diagnosed with JMG, this is certainly a stressful time for your family. You are being given lots of new information and are probably feeling overwhelmed. It's normal and acceptable to go through a range of emotions. Fortunately, there is a lot of help available to you.
This list outlines some of our resources at Boston Children's and in the wider community that may be helpful to you:
Resources for families:
Please note that neither Boston Children's Hospital nor the Neuromuscular Center at Boston Children's unreservedly endorses all of the information found at the sites listed below.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”