Emergency room visits are a fact of life for many people with rare diseases. For many types of ichthyosis, overheating, heat stroke, or a sudden skin infection, among other illnesses, can play a large factor in the frequency of ER visits. And, when the patient is a child, these experiences can be especially stressful for the entire family. Here is a check list to help you prepare for the ER, long before you need to make the trip. Some are simple, some require a bit more effort – but all may make your experience as smooth as possible:
Prior to your child getting sick or injured, ask your pediatrician and pediatric specialists where you should take your child for emergent care. Remember to inform your child’s daycare or school of your ER/hospital choice should an emergency arise.
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.
Prepare an ER to-go bag. Fill it with comfort items, warm clothes, phone charger, snacks, medical records, ichthyosis educational booklets, and a copy of the updated health care list mentioned above, so you can grab and go when needed.
Prepare an emergency pocket card for first responders who arrive at the scene. (Or, hand them an ichthyosis awareness card from FIRST). Be sure to include the name and contact information of your ichthyosis healthcare practitioner as well as the FIRST website and contact information: www.firstskinfoundation.org and 215.997.9400.
Have a print out from the FIRST website explaining your or your child’s condition so you can hand it directly to the ER doctor. As ichthyosis and related skin types are rare, they may have little or no experience treating the condition.
Use your voice and encourage children to use their own. Explain everything that has occurred, as well as how it may have been handled in the past, and ask your child to explain their symptoms in their own words. Sometimes a clue for treatment pops up when a child offers their own description. (ear hurts, tummy hurts, etc.)
Be sure and have your speech prepared. For example, “My child has ichthyosis and cannot sweat due to her condition. She is prone to overheating and that is what has happened here.” Or, “My child has developed a sudden infection due to her skin condition. She likely has a fever and will likely need antibiotics immediately.”
Be sure to give a Medical Consent note to your child’s guardians. If there is an emergency, they will be able to authorize care for the child. Also remember to inform them of your preferred ER choice.
Find out if your local hospitals, and hospitals near your child’s school, have a Child Life Specialist on staff. Keep their name and number handy. In an emergency, they can meet with you in the ER and can offer support and guidance during a highly stressful situation.
Try and stay as calm as possible. Breathe and realize everyone is doing their best. Your child’s life is what matters and everyone is on the same team. Again, being prepared beforehand can help avoid a panic situation.
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 Emergency Care 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!
Need more tips for connecting with ichthyosis healthcare professionals? Find out how to prepare for your appointment with an ichthyosis medical specialist.