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There are many ways you can help children and their families get the care they need.
Undoubtedly, you were distressed when you learned that your child has Loeys-Dietz syndrome. That's understandable — no parent wants her child to be unwell, and Loeys-Dietz syndrome can cause some serious health problems.
However, keep in mind that the symptoms — and their severity — of Loeys-Dietz syndrome vary widely. And although there is no cure for Loeys-Dietz syndrome, advances in treatment mean that doctors can help increase your child's life expectancy and quality of life.
At Boston Children's Hospital, a team of medical specialists will work with you and your child to design an individualized plan of treatment — so that we may effectively manage the condition and allow your child to have a healthy, productive life.
Loeys-Dietz syndrome is a complex condition, and no one specialist is equipped to treat your child for all of his symptoms. That's why at Children's, we have an innovative multidisciplinary approach to treating children with Loeys-Dietz syndrome.
Your child's care team may include physicians from several disciplines, such as Ophthalmology, Orthopedics, Genetics and Cardiology who have experience treating kids with the varied symptoms of Loeys-Dietz Syndrome.
We're also continually involved in research with physicians and researchers in other institutions in an attempt to provide the most up-to-date and effective care for children with Loeys-Dietz syndrome.
Loeys-Dietz syndrome can be a complicated condition, and it affects different children in different ways.
Some children with Loeys-Dietz syndrome may only need minimal treatment. For those children who do need more treatment, we focus on managing your child's symptoms.
They fall into several categories, depending on what part of your child's body is affected.
Since the most dangerous complication of Loeys-Dietz syndrome is the rupture of an aneurysm, such as of the aorta — which is potentially fatal — it's important to get the right treatment.
A good rule of thumb for cardiovascular activity is that your child should be able to hold a conversation while exercising.
Joints and bones
If your child has the flexible joints characteristic of Loeys-Dietz syndrome, he may experience some pain after physical activity. The orthopedic physician will discuss ways to manage this pain.
Facial features and mouth
At Boston Children's, we consider you and your child integral parts of the care team and not simply recipients of care. Your care team will be with you every step of the way to ensure that you and your child are getting the support you need.
We want to maximize the safety and effectiveness of whatever therapy you and your child's doctor decide upon.
Supportive care involves preventing and treating infections and side effects of treatment to keep your child as comfortable as possible while we're working to manage the symptoms of her Loeys-Dietz syndrome.
Your child's physician and other members of your care team will work with you to set up a schedule of follow-up visits.
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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.”