Speaking With Your Baby's Healthcare Provider

Communicating with your baby's healthcare team helps to ensure

Appropriate and up-to-date care

Active participation in care

Working together with the healthcare team to make the right decisions

Healthcare providers typically have busy schedules, so it is always a good idea to come prepared for each appointment. Take notes during the appointment and after; you should ensure that you follow instructions given to you. Call the healthcare provider if you are unclear about the instructions, and if you have follow-up questions, and create a list for your next appointment.

Why is an open and straightforward relationship with the healthcare team important?

  • Diagnosis: by sharing symptoms, even embarrassing ones, honestly with the healthcare provider, you improve the chances of a timely and accurate diagnosis
  • Disease Management: an open dialogue with the healthcare provider will allow you to ask questions, even the same question more than once, such as admitting you may not have understood something from a previous conversation
  • Education: the healthcare provider is your main source of information about the illness, and you should feel comfortable asking questions and getting clarifications on all medical, emotional, and even financial issues like insurance

Sanofi Genzyme offers a wide range of Support Services to people with Pompe disease and their families.

Getting the most out of the appointment

Make the most of visits with the healthcare coordinator and team by going to an appointment prepared, which may include writing information down and taking some things with you:

  • Symptoms: When did they begin? How often do they occur? How much do they affect day-to-day life?
  • List of medications
  • Medical history including information about diseases that are common in immediate family members such as parents and siblings
  • Concerns that you have regarding the illness/challenges you are facing with your loved one’s diagnosis, medications, and/or day-to-day life
  • Disease management: What are my options for managing the disease; what supportive care options are available? What are the benefits and harms of each option?
  • Other management-related questions: How much will supportive care cost? Is it covered by insurance?
  • Information and recommendations: Any questions you might have about Pompe disease or about relevant tools/resources for patients with Pompe disease
  • Go through your notes and ensure you have understood the next steps for disease management
  • If you observe unusual or unexpected symptoms, or effects from any disease management options you may have chosen, call the healthcare provider
  • Write down any follow-up questions you think of for the next visit