Your child has the right to good care, treatment, and support for type 3 spinal muscular atrophy (SMA). You can improve your child’s quality of life by learning how to be a good advocate.
Here are some ways you can help your child get the best possible treatment for SMA.
Learn About SMA
“Health literacy is so important,” says Hooman Melamed, MD, an orthopedic spine surgeon and sports medicine specialist in California. “Knowledge is power when it comes to your health.”
Understanding the facts about SMA and how to treat it can help you make better decisions about your child’s care. Knowing what to expect might also help you feel more empowered.
Your child’s care team should share information about SMA with you. You can also look online. But what you read online isn’t always accurate, so make sure you’re using reliable resources. Always look for information from major hospitals, research centers, and organizations such as the SMA Foundation and Cure SMA.
Find the Right Care Team
Look for a clinic or care center that specializes in SMA. You can also find one at the Muscular Dystrophy Association (MDA) or the Pediatric Neuromuscular Clinical Research Network (PNCR). If you’re interested in a clinical trial, the National Institutes of Health (NIH) has a database of research studies you can search.
A care team should include pediatricians, neurologists, and other health care providers who work together to help your child, Melamed says.
The team meets with you regularly to monitor your child for any changes and to give advice and answer any questions you might have.
“You are the expert in your loved one and their needs,” says John Brandsema, MD, a child neurologist and head of the neuromuscular section at the Children’s Hospital of Philadelphia. “The best care providers understand that and will collaborate with you to decide upon the best option for your family.”
If your child’s doctor doesn’t explain things clearly, take time to answer your questions, or fully address your child’s symptoms, look for another doctor.
Strive for Good Communication
Be open with your child’s care team, Melamed says. It’s important to let the team know how your child is doing and whether you’ve noticed any changes in your child’s physical activity.
“We want to hear from you,” Brandsema says. Don’t wait to get in touch. Whether you have a question or concern, your child’s doctor should address it promptly and completely.
Make sure everyone in your child’s care team is talking to one another. “They should be sharing relevant medical information to make sure your child is getting the best care for their needs,” Brandsema says.
Try these tips to improve communication and keep everyone informed:
- Take copies of your child’s medical records to every appointment.
- Prepare a list of questions.
- Take notes.
- Find out how to contact your child’s doctor with questions that need urgent answers instead of waiting for a scheduled follow-up appointment.
Make sure your voice is heard. “If you have barriers to communication, like language, time, or cultural factors, use resources such as social workers and patient advocates at your care centers,” Brandsema says.
At each appointment, your child’s doctor should give you time to ask questions. Being informed can help you decide on the best treatment and support for your child.
You may want to know about:
- Air quality
- Financial support
- Physical activity
- Treatment options
- Treatment possibilities for the future
Try these questions:
- How fast do you think this disease will progress?
- Which activities can my child do, and which activities should my child avoid?
- How often do we have to come in for follow-up appointments?
- What’s the best and most sensitive way to talk about SMA with my child ?
- Are there local support groups that can help?
- Are there any new gene or stem cell therapies that might potentially help in the future?
It’s important to ask follow-up questions to help you understand how SMA affects your child, especially if you don’t fully understand something. “Don’t be afraid to ask questions like why, how, and what,” Brandsema says.
Help Your Child Self-advocate
Your child can learn how to self-advocate. “A first step is having an open discussion about SMA at a developmentally appropriate level,” Brandsema says.
Help your child to understand the condition. Your care center may have a social worker on staff who can help arrange this kind of discussion.
“As they mature, encourage your child to bring a list of questions to visits, speak up first when the care team asks questions, know their medications and doses, and understand their care plan,” Brandsema says.
Get Outside Support
There are many resources to help you navigate your child’s care.
“Ask your center if they have complex care navigators or similar resources,” Brandsema says. “Your insurance company may also have people who can walk you through the ins and outs of your child’s care.”
A therapist can help you manage difficult moments and address your child’s emotional needs.
Consider joining a support group. “It’s a great way to connect with other people experiencing a similar circumstance,” Melamed says. You can also get tips and recommendations for toys, clothing, and equipment that can make your child’s life easier.
You can find forums, blogs, groups, and support at SMAFoundation.org, CureSMA.com, and MDA.org.
“Listen to your gut,” Melamed says. If you don’t know what to do about your child’s care, talk to people you trust. They can help you find the right resources so you can get the support and care you and your child need.
Photo Credit: Brothers91 / Getty Images
John Brandsema, MD, associate professor of clinical neurology, The University of Pennsylvania; child neurologist and neuromuscular section head, Children’s Hospital of Philadelphia.
Hooman Melamed, MD, orthopedic spine surgeon, Cedars-Sinai Marina del Rey Hospital.
Cure SMA: “Living with SMA.”
KidsHealth: “Coping When Your Child Has A Diagnosis Of A Chronic Illness Or Disability.”
SMA Foundation: “Frequently Asked Questions,” “Patient Resources.”
Spinal Muscular Atrophy UK: “Looking After Your Child who has had a Recent Diagnosis of SMA Type 3.”
SpinalMuscularAtrophy.net: “Support Groups for SMA.”