The best source of health information is your child’s care team. Don’t be afraid to ask for more information. Sometimes, your questions may not be answered with absolute certainty. A child can have a set of life-limiting symptoms but not a complete diagnosis of what the illness or causes are. Even if there is uncertainty about your child’s illness, you can expect to have your questions answered honestly by your care team.
Some questions that you may want to ask your care team are:
It may also be helpful to:
While health information can be found in many places, it may not be as reliable as those from your care team and other health care providers. It is best to carefully assess other sources of information as they may not be accurate and can be dangerous or misleading.
Chatting with friends on social media sites can be very helpful for social support, but is not a substitute
for proper medical advice. You may also be thinking of fundraising by using your personal community but these efforts can come with their own stresses on families. If you are interested in learning more about a specific treatment that you have heard about, you can discuss the information with your care team so that they can work with you to find the best option.
Some questions to ask when searching for additional information include:
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