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There are many ways you can help children and their families get the care they need.
A diagnosis of juvenile myasthenia gravis (JMG) comes with a lot of questions and uncertainty about your child’s health, like:
At Boston Children’s Hospital, we know how important it is for parents and families to understand their child’s medical concerns. We’ve provided answers to many commonly asked questions about JMG in the following pages, and when you meet with our team of doctors, they’ll be able to explain your child’s condition and treatment options fully.
What is JMG?
There are two types of MG in children:
Transient neonatal MG
Juvenile MG (JMG)
How serious is JMG?
People who receive effective treatment for JMG can significantly improve their muscle strength, experience long periods of remission and lead normal lives. However, not receiving treatment for JMG can have serious consequences. A child with significant muscle weakness may injure himself during activities such as walking down a flight of stairs or riding a bike.
The most serious complication of JMG is myasthenic crisis; this generally occurs when patients have symptoms throughout their body (generalized myasthenia) as opposed to patients who only have symptoms in their eyes (ocular myasthenia).
Is JMG curable?
There is no cure for JMG yet. However, effective treatment can significantly improve a child’s muscle strength and may increase the duration of symptom-free periods.
What causes JMG?
JMG occurs in the following way:
What are the symptoms of JMG?
JMG is characterized by muscle weakness that typically gets worse later in the day or after a period of activity. However, symptoms of JMG may be difficult to detect because they usually fluctuate. They may also resemble those of other conditions, and may be overlooked. If you observe the following signs in your child, you may want consult your child’s doctor to get an accurate diagnosis:
The severity of symptoms and the pattern of muscles affected vary from person to person. Every person with JMG doesn’t experience all of these symptoms, and a person’s clinical picture can change over time.
Symptoms of JMG can worsen due to :
You will probably have a lot of questions on your mind before meeting with your child’s doctor. At the appointment, it can be easy to be overwhelmed with information and forget the questions you wanted to ask.
A lot of parents find it helpful to jot down questions beforehand. That way, when you talk to your child’s clinician, you can be sure that all your concerns are addressed. Remember that physicians are open to learning from families too. Attend conferences, read up on updated materials and don’t be afraid to share what you have learned.
Some questions you might ask include:
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.”