Wednesday, March 01, 2006

"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!



Anonymous Anonymous said...

I wish all caregivers of kids with high medical needs would heed this advice. When I transport 'complex' kids (and man, we see a lot of them, many living and generally thriving in startling remote and medically underserviced areas), I beg the parents for their 'protocol letter' or some kind of documentation, because between a complex kid, a nine billion decibel airplane ride, often a language barrier, and a sick kid, we, and our medical control, usually feel like we're way behind where we should be in caring for these kids. Luckily our local childrens hospital, and the 'zone' docs are starting to see the value of at least a letter, and list of emergency instructions for our metabolic kids (particularly we see lots of Gluteric Aciduria for some reason). Please, spread the word!

2:37 AM  
Blogger Flea said...

Excellent points. I agree completely.

I hesitate to offer an aside to your post, but I will:

Children without complex medical problems are also at risk when they go to the ER.

This is why ER visits should consist of visits by emergently ill children only.

Fleas like me must do a better job keeping all children, the ones with Glutaric Aciduria Type II (I have one in my practice) and the perfectly healthy ones, out of the ED.



9:00 AM  
Blogger mary said...

anonymous, the truth is most of these kids are out there without a person-like-me, a "case manager" or care coordinator or whatever the terminology of the decade is. :-) So, we all have to spread the word: if your kid has special health needs, he will eventually be seen in an ER by some staff who have no idea about what to do. Be prepared, for everyone's sake (staff as well as patient).

Flea, aside away! That's what makes interesting conversations.

I take your point about keeping out of the ER, an excellent preventative measure on all counts: less costly, less scary, less error.

9:59 PM  
Blogger Peggy Lou Morgan said...

Liz Ditz ( sent me the link to this post because it reminded her of our situation. I couldn't agree more with your comments.

My 23 year old son, Billy Ray, had been experiencing greatly increased aggression. He had a skin infection so was on antibiotics at the same time. The antibiotics masked the lab results though our local clinician was thorough. Being a distance from the hospital the clinic does not have hospital privileges. Eventually our clinician sent us to ER.

The ER doctor ran the usual blood work and other prelims. I was telling him this behavior is clearly related to physical not his complex special needs. He did not know me or my son. He sedated Billy Ray on Ativan and Morphine which alarmed me. It was his stated intention to send my son home on increased psych meds because "there is no medical reason for this much agitation." I finally convinced the doctor that BR is credible about pain and has a high pain tolerance.

Cut to the chase, he ordered a catscan which found a leaking appendice, enlarged pancreas, acid reflux and an ulcer. He was rushed to emergency surgery. I firmly believe that had I taken him home Billy Ray would have died.

Since this is so long I won't elaborate much except to say that I create an abbreviated history for my son and recommend it my book Parenting Your Complex Child (AMACOM Books April 2006). Unfortunately we had just moved at the same time I was finishing my book and files were not handy during this crisis. It is a vital tool to have available at all times.

Thanks for this wonderful information,

11:18 PM  
Blogger mary said...

Peggy, thanks for your illustrative example. I notice that the often-quoted concept that "behavior is communication" is referred to by you as "communication by behavior".

For people with limited language ability, behavior is their primary communication.

I'll be happy to put a plug here for your book, which can be viewed at Amazon (I haven't read it but it looks like it's packed with information).

7:23 AM  
Blogger Bonnie Sayers said...

Great Article Mary. I found your article through your comment on Peggy's blog relating to this article.

I am very new to blogs, but am doing some reading around to see what people are posting about.

I am the single parent to two boys on the Autism Spectrum. My site is

I am now going to read your non-compliant parents posting.


7:33 PM  
Blogger That Girl said...

Thanks! This is exactly what happened to me when I took my son to the local emergency room. Watching him die (and subsequently be revived) later on made me a crazy person when it somes to being sure doctors are on their toes.
Im glad Im not the only one, it makes me feel better.

12:10 PM  

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