5 Tips for Making Every Doctor’s Visit Count When Your Child Has Angelman Syndrome

5 Tips for Making Every Doctor’s Visit Count When Your Child Has Angelman Syndrome

Effectively managing your child’s health can be extremely challenging. There is a lot to keep track of with chronic medical conditions, but staying organized can help.

Here are 5 tips for making each doctor’s visit count when you have a child with Angelman syndrome.

Make a list of your concerns

Does your child show noticeable new symptoms or behaviors, or changes in existing ones? What have you noticed since the last doctor visit?

Has a change in medication helped, or might there be side effects that you have questions about?

Make a list of your concerns before the visit, so that you can get all of your questions answered.

Keep your records together

Keep your child’s medical records together and take them with you for the visit.

It’s a good idea to keep records packaged together with your health insurance information. Also keep a current list of all medications and supplements, as well as the frequency of their use and dose given, with this package.

If your child is on a special diet, record it so this information is close at hand for the visit.

Have a plan for the appointment

What are your goals for the appointment? Is it a follow-up to a procedure or for a test? Do you need to discuss a medication change, a new symptom, or something you’re curious about?

Have a plan to make sure that everything you need to accomplish can be done during the appointment.

Record your appointment

A lot can be covered, even in routine doctor’s visits, and it’s easy to lose track of small details or miss something important. Use an app on your phone or other device to record the doctor’s recommendations. Make sure you get your doctor’s permission before you start recording, and review the recordings soon after the appointment.

Update your treatment plan

At the end of every appointment, ask the doctor to review the treatment plan for your child. A treatment plan is a detailed package of information about a person’s disease, the goals of treatment, various treatment options, and potential side effects and concerns.

Update your child’s treatment plan after every appointment. If your child is in daycare or at school, ensure that the school’s copy of the treatment plan is also updated with each appointment, even if no changes have been made. Review the treatment plan with your child’s teacher and, if available, school nurse to make sure they understand the treatment plan and any changes made to it.

 

Last updated: August 19, 2019

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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