"Anybody know anything about this kid?"

Children With Multiple Disabilities in the ER

Children with special health care needs (CSHCN) are at risk when they visit an emergency room. Yes, you read that sentence correctly: they are at risk when they visit an ER. This is particularly true for children with low-incidence conditions, but it's also the case for those with complicated disabilities or multiple conditions.

The AAP had an interesting little news report in 1999, when they launched the effort to encourage pediatricians to help families develop emergency care plans for CSHCN. There are two illustrative cases which show how the emergency logarithms and flowcharts for triage can interfere with children whose care requires out-of-the-ordinary treatment.

However, even those children who could benefit from ordinary emergency treatments are at risk from clinicians who don't understand the intricate complexities of their little individualized extra-ordinary lives. For example:

~~Children who are participating in clinical trials of medications or formulas and who come to the ER without their parent (for instance, when both have been in a car accident and the child comes to our pediatric facility).

~~Children awaiting congenital heart repairs, or who have had partial repairs (stage one but not subsequent stages, for instance).

~~Children with rare metabolic disorders.

~~Children with common incidence disabilities (such as cerebral palsy or Down syndrome) but who have multiple complications, many doctors, much equipment, frequent illnesses.

The AAP and the ACEP (American College of Emergency Physicians) recommend that all parents have emergency plans written down for just such events. Because it is not easy-for ER staff or parent-to arrive in a crowded and busy ER with a sick and unusual child with a long complicated history and multiple specialists who each treat a portion of the body or a particular symptom.

What I often see happen is the ER staff discounts mom's worries because she can't make a diagnosis of what is wrong. Yes, you also did read that sentence correctly! Staff somehow expect not only that mom can tell them exactly what treatments and medications the child is receiving, what body systems are affected, the entire medical and surgical history of the child, and which specialists are currently seeing him, but also "what's wrong".

I realize there are exceptions, and parents don't always know an emergency from an acute illness or possible simple complication. However, most parents become acute observers of their complicated children and know when something "just isn't right". When they tell you their kid with a G-tube "sometimes throws up, but not like this, not this much", or that their child with partial heart repair "sometimes looks a little blue but I've never seen his mouth this color before"-it would be a good idea to listen.

Meantime, I try to get all my families to fill out emergency cards at the least, with meds and doctor names, etc. Lots of my parents have care notebooks, with histories, surgery dates, medications, doctor phone numbers, etc. This helps-if they bring it!

However, more than one of my clients' moms have had ER staff raise their eyebrows when she pulls out the care notebook: instead of a prepared mom she becomes an "overinvolved parent", a control freak, and someone who doesn't know her place.

Well, I suggest ER staff understand that these parents are caring for children who, if they were in-patient, would require professional nursing services. They have tube feeds, IV ports, trachs, oxygen, suctioning, bladder cathing, etc. The mom with the care notebook is your ally, not a control freak. Not an "overinvolved parent". She has had to learn nursing by on the job training, and so lacks any fundamental theory of illness. She only has one patient, but believe me, she knows that particular patient pretty well.

It would be a good idea for ERs to stock the emergency plans from AAP/ACEP, or something similar, and hand out to parents as they are leaving the ER if they have not come in with one. Make your life easier the next time they visit. Because, if he lives in your community, that CSHCN will be visiting you again!

mary