As we all know, going to the Emergency Room involves a lot of sitting around and waiting, even if your child is very ill. Children with serious medical conditions may have their health and safety negatively impacted by waiting periods, and may become very sick if the appropriate interventions are not provided quickly. In order to streamline the process and get your child the care he needs quickly, it is best to have an official ER protocol for your child.
Why Your Child Needs an ER Protocol
Let’s take a look at a little girl with mitochondrial disease who is brought into the Emergency Room with dehydration from a virus. Mom reports to the triage nurse that her daughter has had a runny nose, fever, and cough for three days, and has been vomiting occasionally. She cannot keep her hydrated even using a feeding tube, her heartrate is elevated, she is sleeping a lot, and she is beginning to look worse. In most cases, the triage nurse—who probably has never heard of mitochondrial disease—will perceive this child as not that acutely ill, and will not place her in a room or have her seen by a doctor immediately.
What the triage nurse doesn’t know is how quickly children with mitochondrial disease can decompensate, and how immediate rapid intervention can prevent a major decline in the child’s health, if implemented appropriately. Despite the mother trying to explain multiple times that her child needs to be seen urgently, the triage nurse dismisses her as a nervous mom. As a result, the child sits in the waiting room for three hours. Her blood sugar begins to drop and her vital signs become progressively more unstable. By the time she is seen by a physician, she is in a crisis. She ends up being admitted and is inpatient for five days.
Had this child had a letter from her physician explaining her condition and clearly outlining a protocol for testing and treatment, her crisis likely would have been avoided. She may have been able to receive the appropriate treatment in the ER without needing to be admitted, or she may have only needed one night in the hospital.
Any child whose condition requires special precautions, who is complex, who can decline rapidly, or whose presentation may be atypical should have an ER protocol letter. Not only will it get your child in to see the doctor faster, but it will also ensure that the appropriate treatment and tests are performed.
What Should Be in an ER Protocol Letter?
The content of the protocol letter will vary depending on the child, her condition, and past illnesses or experiences. Many disease organizations have templates for ER protocol letters. See, for example, the following:
Your child’s protocol will be highly individualized, but should contain all of the following general information:
- Child’s name
- Primary or coordinating physician’s name and contact information
- Specialist physician’s name and contact information (if appropriate)
- Primary or most critical diagnoses
- Any allergies
- General medical considerations
- Physician’s signature
The remainder of the ER protocol should contain very specific instructions for care and testing of your child, delineated by presenting symptoms. Any commonly presenting set of symptoms or conditions should receive a separate protocol. If, for example, a child often presents with respiratory distress, a specific protocol should be developed for respiratory distress. Common conditions that are included in letters are respiratory infection, gastrointestinal distress, suspected systemic infection, hypoglycemia or hyperglycemia, autonomic crisis, pain crisis, and so forth.
The instructions should contain the following elements, as applicable:
- Presenting symptoms
- Vital signs to expect and that need to be monitored
- Testing to be initiated
- Treatment to be initiated
- Medications that should or should not be administered
- Things that should be avoided (such as fasting)
- When to contact the specialist if greater assistance is needed
- Anything else of urgent importance
Here is an example of instructions for a child with a central line who has a fever, who we will call Child A:
Child A has a central line for IV nutrition due to chronic feeding intolerance. With a central line, she is susceptible to serious bacterial infections in the blood stream. Our general rule with children with these lines who have fevers is as follows:
- Blood culture from the line daily until negative cultures x48 hours
- Empiric antibiotic coverage with Vancomycin and Ceftazadime
- Admission until we prove there is no bacteremia
Here is another example for a teen with mitochondrial disease presenting with a new acute illness:
Treatment goals during a crisis period center on stabilization and treatment of whatever process precipitated the crisis (i.e. infection, dehydration, etc.). However, basic care parameters aimed at some of the specific problems associated with mitochondrial disease are indicated and implemented as needed.
- If acidotic, IV sodium bicarbonate as necessary.
- IV access for intravenous fluids and monitoring. Rehydrate as necessary.
- Maintain hydration using D5 1/2 normal saline solution along with KCl if urine output is normal administered at a maintenance rate up to 1 1/2 maintenance. Modifications in solutions as indicated by age or circumstance.
- Monitoring of following blood tests aimed at detecting abnormalities seen in mitochondrial disease including complete metabolic panel, lactate, CPK, and blood gas, the latter if indicated.
Your child’s plans may look entirely different, but should present a clear plan of action as illustrated by the two examples above.
Other Helpful Information
It is also very helpful to have a document available with a brief medical summary or history for your child. This can be a helpful reference for you and for the physicians treating your child.
It is best to have a very concise emergency form, such as the AAP/ACEP Emergency Information Form, that can be read quickly in an emergency. This form only includes vital information, such as diagnoses, normal vital signs, and medications in a universally accepted and simple format.
A more complete medical history, by organ system if possible, can also be extremely helpful, especially for a child who is very complex.
With an appropriate ER protocol and additional emergency information, your child should be treated appropriately at the ER. Many children’s lives have been saved by protocol letters, so make sure to have one for your child with complex medical issues.