Navigating the Emergency Center for children with rare diseases

May 25, 2016

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Millions of children are living with a rare disease, or a disease that occurs in less than 200,000 people in the United States. To date, there are roughly 7,000 different types of rare diseases, and many of them cause serious and complex medical illness and disability. Although children with rare diseases may frequently interact with the health care system, unexpected emergency center (EC) visits and hospitalizations commonly cause additional fear, stress and uncertainty.

On May 26, I'll participate in a Twitter Chat (#RareERChat) with the National Organization for Rare Disorders (NORD) to discuss the various ways caregivers of children with rare diseases can navigate an EC. Below are some of the questions we'll discuss.

What are some challenges children with rare diseases may face in the EC?

  • Many children with rare diseases have complex medical needs and may require specialized, pediatric care and treatment.
  • As rare diseases affect such a small percentage of the population, some EC physicians, nurses and staff may not be familiar with your child’s disease or its associated complications.
  • If your local EC and/or hospital is unable to provide specialized, pediatric care or admission, your child may need to be transferred to a specialized children’s hospital.

How can parents and caregivers best handle these challenges?

  • An EC visit can be extremely stressful! Preparation may reduce some of the uncertainty that surrounds an unexpected illness or injury.
  • Prior to your child getting sick or injured, ask your pediatrician and pediatric specialists where you should take your child for emergent care.
  • Create and frequently update a list of your child’s diagnoses, surgeries, medications, allergies, vaccinations and special diets. Be sure to include the name and date of the surgery and the concentration/dosing/frequency of all prescribed (and non-prescribed) medications and formulas.
  • Keep your physicians’ names and contact information readily available in your phone or medical folder.
  • Prior to, or on the way to the EC, call your child’s pediatrician and/or specialist. Let them know about your child’s symptoms and the name and location of the EC/hospital you are going to. Typically, they will try and contact the EC physician to help with medical and treatment planning.

What do EC physicians and staff need to know to provide appropriate care for a child with a rare disease?

  • Helpful information includes: your child’s medical and surgical information, abnormal labs or radiologic findings, recent medication/treatment changes and hospitalizations.
  • Also, give plenty of details about your child’s illness or injury, such as the duration and description of symptoms, and whether or not your child has had similar symptoms or illnesses in the past (especially if it was related to your child’s rare disease).
  • As rare diseases may be life-threatening, end-of-life decisions and requests may need to be discussed with the EC physician and staff.

What are some ways that caregivers can make the EC less stressful for children with rare diseases?

  • Because children are extremely aware of their caregiver’s feelings and behaviors, try and remain calm (even though this is much easier said than done). Also, giving your child lots of hugs and verbal reassurance can go a long way!
  • It’s hard to predict how long you’ll be in the EC. Be sure to bring your child’s home medications, snacks or special dietary needs, games/toys, electronic devices, extra clothing, and comfort items, such as blankets and loveys.
  • If older, allow your child to express his/her fears and concerns and give him/her the opportunity to participate in aspects of the medical decision and treatment planning.
  • If available, ask for a child life specialist! They can describe procedures in age-appropriate language, help with coping and distraction strategies, and provide games and activities during the E visit.

 What resources and materials do caregivers need to bring for an EC visit?

  • Be sure to bring your child’s list of medical information and any recent lab results and/or radiographic images (if available).
  • A list of all of your child’s physicians would be very helpful. Be sure to include their name, pediatric specialty and contact information.
  • Remember to bring your license – or another form of identification, insurance card, cell phone and charger, and notebook/pen to jot down questions and notes.

How do you choose the right EC for your child’s needs?

  • Your EC choice will most likely be determined by where you live or where you are located at the time of the emergency and the severity of your child’s symptoms.
  • Your child’s pediatrician and pediatric specialists can help identify the best and closest EC for your child’s needs. Be sure to ask during your child’s annual visit!
  • If your child is unresponsive, not breathing, has blue/pale skin, or appears very ill, call 911 and go to the closest EC.

What other advice do you have for caregivers of children with rare diseases while navigating the EC?

  • Remember to inform your child’s daycare or school of your EC/hospital choice should an emergency arise.
  • Before traveling, update and pack your child’s medical list and physician contact information. Also, be sure to locate and research local ECs and hospitals in the area where you’ll be staying.

With the continued growth of the internet and social media, parents and caregivers now have the opportunity to connect with medical experts, advocacy groups and other parents and families of children with similar symptoms, diagnoses and medical journeys. Remaining informed and up-to-date on your child’s disease and medical history is an absolute necessity, for it affords you the opportunity to actively collaborate in your child’s EC management and treatment. Always remember, as the expert on your child and a vital member of the medical team, never be afraid to voice your thoughts and concerns during any medical encounter!

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