Be an Advocate
You the parent/caregiver are an important
member of the interdisciplinary team!
Organization is Key
Think in advance about the questions you want answered. Write down and prioritize those questions. Send a list of the questions to your doctor in advance, if you think that would be helpful.
Keep good records
Provide your doctor with good, accurate information about symptoms and medications, so he or she has the necessary tools to accurately diagnose and prescribe appropriate treatment. A list of medications and supplements currently being taking, recent symptoms and the dates at which they occurred, any recent tests and names of other doctors being seen can be useful information to share with a doctor as well.
Before Your Visit
- Familiarize yourself with your child’s medical history, so you can convey it concisely to the doctor. Writing out a brief synopsis to give a new doctor can be helpful and save time.
- Keep a diary to track your symptoms and concerns. Convey these clearly to your doctor.
- Share subjective information specifically from your child if possible.
- Share objective information in which you have observed.
- List medications being taken with their dosages. Tell the doctor about any medication changes.
During Your Visit
- Be mindful of the doctor’s limited time with you.
- Take notes.
- Be concise in your communication. Take that list of questions you wrote down prior to the appointment and don’t forget to write the doctor’s response.
- Ask for clarification if you don’t understand what you have been told, or if you still have questions.
- Ask what to expect next. What type of therapies or treatments would be appropriate?
- Ask for explanations of treatment goals and side effects.
- Remember, though, that communication between the two of you is critical, so be sure that his/her ego doesn’t inhibit your ability to communicate about the important aspects of your child’s illness or condition.
- This doctor may think that everything he/she tells you is right, or the best answer. When it comes to those aspects of being a wise parent that involve asking smart questions, or sharing information you have learned about a diagnosis or treatment options, know that a difficult doctor may resist the discussion, may ignore you, or get angry. If that happens, try to smooth out the conversation by stating that you understand what has been explained to you, that you know that both of you have the same goal – to improve your child’s health status – and that he/she can create a win-win for both of you by explaining their rationale behind their information. Don’t be intimidated out of the conversation! But know that you’ll have to approach this difficult person differently to step around an ego.
- Let your doctor know if you are seeing other doctors or health care providers.
- Share information about any recent medical tests with other doctors.
- Stand up for your child. But be respectful as you do not want to burn a bridge, especially if this is the only bridge in sight. Balance assertiveness with friendliness and understanding.
Often doctors are reluctant to accept or rely on internet information due to many sites falling short of credible information. However, when it involves rare issues such as CMTC, they are more receptive. But keep in mind, there are some sites with inaccurate information about CMTC and other vascular malformations.
“Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion; actions bring results”