Medical Alert and Emergency Letters
My child’s Mito specialist wants us to follow an emergency protocol when she gets sick. I worry about her when she’s not with me because she’s too young to tell paramedics or emergency room doctors about her health problems and necessary emergency treatment. She doesn’t “look sick,” but a simple illness that might not even cause another child to miss school could put her in the hospital. I don’t want to keep her from doing all the things that her friends do, like going to camp or sleeping over a friend’s house, but I need to keep her safe by making sure her emergency protocol is followed. What can I do?
When you or your child has a condition that is often “invisible” but can easily become life-threatening, emergency planning and prevention is extremely important. Calling for an ambulance or visiting the emergency room can be an extremely frightening experience, even the most articulate, knowledgeable person can have difficulty remembering and sharing medical information. Therefore, most medical professionals recommend that everyone with any type of medical problem maintain some type of medical alert information, and keep it updated and accessible at all times.
When minutes count…
Do you or your child have a condition that needs to be communicated within minutes of a health emergency? If so, a wearable medical alert product is strongly recommended. There are several styles and systems to choose from. Complex Child, an online e-zine, created this very useful article regarding several kinds of wearable medical alert devices.
The Medic Alert Foundation is a not-for-profit program that maintains an internationally-accessible medical information database for members who pay for the service. Members wear a tag engraved with their most important medical information as well as a toll-free phone number and a serial number. Emergency care providers can call the toll-free number any time of day and are connected to an operator, who will relay the information that the member has provided, including additional details about health problems as well as medication that the member takes. Members are responsible for updating medical problems and medication changes as they occur. The Medic Alert Kid Smart program provides bracelet and 24hr access to vital health information for $15/year.
The Golden Hour…
When an individual is involved in an accident or medical emergency, it is extremely important to make sure appropriate treatment is begun as quickly as possible. If an individual with Mito is sick or injured, the emergency medical professionals need to know what the diagnosis is, what kind of action is needed when the individual is experiencing a medical emergency, and who to contact for more information about the Mito diagnosis and care the person is receiving. Unfortunately, meeting these needs is not as easy as it sounds.
Mito What? As a person with Mito or the parent or guardian of someone with it, you’ve undoubtedly come across medical professionals who have never heard of Mito, or are unfamiliar with current research and expect to see a child with severe developmental and medical issues. The middle of a medical crisis such as repeated vomiting or a seizure is certainly not the appropriate time to educate the clinician about the vast differences in the way Mito can present in different people. This is where an emergency letter can be extremely helpful. An Emergency Letter is a protocol, a “cookbook” of instructions that explain the basics of the disease, the symptoms the patient will show, the tests to consider, and the treatment recommended for those specific symptoms. UMDF offers sample emergency letters for adults and children in their patient toolkit.
Some Mito-related complications require more specific emergency protocols. Here are a few examples:
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