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There are many ways you can help children and their families get the care they need.
There is no cure for Raynaud's phenomenon—something that can be difficult for a parent to hear. But the good news is that in most cases Raynaud's doesn't do any harm, and shouldn't cause undue concern for you or your child. When symptoms become bothersome, simple lifestyle changes go a long way in helping children with Raynaud's manage their condition. These include:
In addition, your child can take steps to control an attack once it starts.
For children with secondary Raynaud's—the rarer, more serious form—or for children with primary Raynaud's that can't be controlled in other ways, medical treatments can help rein in the frequency and severity of their attacks and prevent tissue damage. Some types of drugs you might hear your child's doctor mention are:
Raynaud's patients with extremely severe symptoms may also need surgery or injections to block the nerves that control their blood vessels. But these procedures are very rare.
We understand that you may have a lot of questions when your child is diagnosed with Raynaud's phenomenon, like: Will it affect my child long term? What do we do next? We've tried to provide some answers to those questions in the following pages, along with the reassurance that most children diagnosed with Raynaud's will go on to live perfectly normal lives.
Those with secondary Raynaud's, however, often have underlying autoimmune diseases that can be extremely challenging for both patients and their families to deal with. Boston Children's Hospital offers a range of coping and support services for children with these diseases.
Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have: What is treatment like? Are there any side effects? They will also reach out to you by phone, continuing the care and support you received while at Children's.
Parent to parent: Want to talk with someone whose child has Raynaud's or a similar condition? We can often put you in touch with other families who can share their experience.
Faith-based support: If you and your family find yourself in need of spiritual support, we can connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your treatment experience.
Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.
On our For Patients and Families site, you can read all you need to know about:
There are also a number of groups that provide further information on Raynaud's phenomenon and/or related illnesses, and may even be able to connect you with parents across the country. Two are:
The Experience Journal is an online tool developed here at Children's. The journal provides a place for you and your child to read stories and advice from other kids and families affected by various medical conditions.
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.”