Creating a Care Notebook
Your child’s healthcare needs may be complicated. It’s hard to remember everything! It’s helpful to keep a notebook of health-related information. Some examples of health related information are doctor’s reports, dates of operations, or a list of medicines your child takes. Some people use a care notebook so they can keep everything in one place. You may wish to bring the notebook with you when going to an appointment.
Having all of your child’s health-related information in one place will help you stay organized. You never know when you may need to access your child’s medical records. For example, you may need to know what medications were tried, or when a procedure was done. You are more prepared to stay on top of your child’s care if you have the information you need. Healthcare providers will also have your child’s medical records, but large medical facilities have many patients, and sometimes information can be lost or missed.
You can create your care notebook using your own pages, or here is an example from the Exceptional Children’s Assistance Center website:
https://www.ecac-parentcenter.org/wp-content/uploads/CareNotebook-English-Completely-Fillable.pdf
Creating an Emergency Care Plan
A notebook with all your child’s health information can get really big. A simple list of the most important information is important to keep in case of an emergency. Your child’s healthcare provider can help you develop an emergency care plan. Having a plan will ensure your family is prepared when your child needs immediate care. This is a plan for what to do in an emergency, and anyone who helps care for your child should know the plan as well. An emergency care plan may include:
- Base line vitals (heartrate/respirations/temperature, etc.)
- Signs and symptoms to watch for
- When to call a healthcare provider
- Who to call for which symptoms or concerns
- When to seek immediate care and where to go
Children with complex medical needs sometimes get lost in the cracks between the specialists and their primary care provider. When a crisis occurs and they must access the emergency system, they can be left vulnerable because of a lack of access to information about their medical problems. There can be delays in treatment, unnecessary tests, and sometimes serious errors as a result of lack of access to information available to the treating emergency physician. To facilitate prompt and appropriate emergency care for children with special health care needs, the American Academy of Pediatrics (AAP) and the American College of Emergency Physicians (ACEP) have developed an Emergency Information Form (EIF) which can be used as a tool to transfer critical information about your child.
