Saturday, January 3, 2009

DIASTAT saves lives, nurses rebel

My daughter has epilepsy. She rarely has seizures, but this fall she had a couple months of serious episodes following routine oral surgery. This was our first encounter with the power of the school nurses union. To paraphrase the suffragist song from  Mary Poppins, "though we adore nurses individually, we agree that as a group they're rather stupid."

My daughter was prescribed Diastat by her neurologist to give in the case of "prolonged" seizures.  Diastat is designed to be given by first responders and lay persons. "It can be administered by day care personnel, babysitters and caregivers," says the note from her physician.

Apparently, the California School Nurses Association (CSNA) disagrees. Their public position is that Diastat should only be administered by licensed personnel. Initially, the union was satisfied to have this position be advisory. However the CSNA managed recently  to have it written into the Education Code that only nurses may administer this emergency medication in public schools. It is now illegal for classroom staff to give this life saving medication-- even if the nurse is for some reason, unavailable. Not even in an emergency. 

Which is exactly what happened this fall.  My daughter had a seizure at school. Her classroom staff called after five minutes in a panic--  the nurse was not there. They were not allowed to give the Diastat and my daughter was turning blue.

Before five minutes, 80% of seizures will stop on their own, but a seizure lasting five minutes has an 80% chance of going status.  Status Epilepticus can lead to hypoxia, heart arhythmia, brain damage and even death.  Diastat is designed to prevent seizures that last five minutes from progressing to status. It is like pouring water on a fire.  It can prevent a major medical emergency from developing. 

My daughter was experiencing a major medical emergency and the nurse was at lunch. 

I pulled up as the fire truck arrived. My daughter was unresponsive, breathing and blue.  It had been a total of 18 minutes from the first call. She could have had the medication at five minutes, if the school had followed the prescription from the doctor. By law, they cannot. The CSNA feels it has the authority to over ride orders from a physician. Not only is this over reaching their medical authority as nurses, it is bad policy. 

This policy, in it's logical end, means that:

In a school with a single student with epilepsy who is prescribed this medication, Districts must: 
  • hire a nurse for the entire school day, every day at huge cost not included in the state education budget
  • provide  relief nurse for lunch and break, 
  • hire a nurse for field trips,
  • and stand by and do nothing when emergency medication is available and the nurse is not, potentially putting students at grave risk.
This policy is scandalously self-protective. 

Several nurses that I have spoken with individually oppose the policy, saying it places students at unnecessary risk. They claim the policy came about because of CNSAs fears of liability for nurses who train staff to administer the medication. 

That is a test case waiting to happen. Let's see-- you, the nurses union, were afraid you would be sued if someone made a mistake giving life saving medication to my child. So instead, my child dies or is injured when medication is withheld.

I hope no one has to test this law. Instead, I hope families of students with epilepsy will join us in contacting their local legislators in an attempt to change the education code.