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. 

Wednesday, December 31, 2008

New Year, Old Grief

This will be more of a personal posting than most of the previous. I guess it is the new year that puts me in a reflective mood. 

One of the things about living with deep love for someone with a progressive illness is that the grief ebbs and flows-- like the tide.  This year for me grief was a spring tide at full moon. It breached my seawall and flooded my reserves. 

The low point was a trip to the emergency room by ambulance-- the 10 in a month-- for seizures that would not stop. I watched the nurse team thread the IV, and laid my head on her bed, holding her hand and singing to her. She stopped seizing and slipped into the deep sleep of her post-ictal state before they got her meds on board. When the doctor came in, she said, "I don't know why you keep bringing her in, there is nothing we can do. " That was the high water mark.

But the ebb always has followed. Four months later, she has been seizure free for three months. (There really are some things they can do for her.) But not well, yet. Maybe never. 

I recognize the state I have been in for six and a half of her eight years. It is the same state I was in for the two years my father was dying of cancer. The heightened alert state that comes with dealing with a health crisis. The almost crushing desire to make every moment count. Of knowing the last moment is near. Except that now I must learn to sustain this for a lifetime, twenty, thirty, forty more years. If I live that long. 

Sometimes, like now, the urgency ebbs. As she goes through a spell of being relatively well. Then I have time for other emotions. I want to run after the tide, chase it to the low tide mark and throw sticks at it, rage at it for ruining my sand castle dreams, the imagined life of parenthood. 

I took her two sisters to the mountains to play in the snow this weekend, and we had so much fun! We played until we were exhausted and cold, then drank hot chocolate from our thermos as it began to snow. It was a slice of heaven. And all day, I missed my other girl. All day I was racked with guilt. She was home with my partner, watching movies and hanging out... her favorite. We know she hates the snow. Her poor circulation puts her at risk of frost bite. Of course she cannot come. Of course she is happier at home with dad. Of course I am lucky to have a partner who will be that dad to her.  But I missed her. I missed what might have been. I missed seeing her joy in our shared experience. 

I want her to be well, to be whole. I want joy for her-- for her world to be bigger. She who has had so little, and deserves so much.  I long for a cure. I long for a cure. 

And in the meantime, I long for acceptance. And strength. And a better seawall. That aphorism that god only gives us what we can handle is a bunch of hooey. We handle what we are given if we can. I hope to handle what I am given with a bit of grace and a lot of love. The love is easy. The grace? Not so much. 

Tuesday, December 30, 2008

Total Quality Management in Special Education?

This is a link to the Quality Indicators for Assistive Technology home page. This consortium, out of the University of Kentucky, has created these indicators as a tool for evaluating program effectiveness. 

I am not a big fan of the movement to view education as a business (for many reasons not relevant to this post) but one area that I think education systems could learn from is Total Quality Managment.

After a three year saga with our district to get an Augmentative and Assisitive Communication assessment and speech generating device for my daughter, our district has agreed to complete a program quality review in this area. We are using the QIAT indicators. I am interested to see how the process goes, and eager to post some of the lessons learned along the way. 

My initial impression? This is a completely new process for the district. They really have very little, if any experience with collecting data about performance and using that information to improve their programs.

That might explain a few things. 

I am excited that they have embarked on this project and are including parents and many community stake holders. Quality management is a challenge for businesses with plenty of experience-- for the district to take it on voluntarily is remarkable.  I hope that this initial model becomes a process for improving quality that the district can use-- eventually-- in other program areas.  

Monday, December 29, 2008

California's Toxic Soup

For those who like to read such things, this link is to a environmental law brief on California's attempt to regulate toxins. 

I have come to accept that my kids are swimming in toxic soup. I thought about moving to Alaska and living in a yurt, like some friends of mine, but I learned that among indigenous people there, the levels of some neuro-toxins in breast milk is almost as high as my own. There is no where to go. I will have to cast down my bucket right where I am. And hope the water is potable. 

After over two weeks at home with three kids under 10, the house was a mess this week. I woke up yesterday determined to tackle it. Seeing me mop the kids begged to be allowed to spray, wipe, wash and otherwise play in the water and suds. Being eager for any productive distraction, I took off my gloves and began sorting through our various cleaning products, looking for something mild and non-toxic. 

After sorting through every thing we had, I finally settled on dish soap-- without anti-bacterial agents. I'm not sure if it is safe, but it is probably safer than the GreenWorks  stuff I used myself. 

Even before my first daughter became symptomatic with a neuro-developmental disorder, I usually bought the greenest product I can find. But the recent discussion about chemical replacements in plastic toys has heightened my sense of alarm. Scientists don't know what is in stuff on the market. In fact, they cannot find out, because by law, manufacturers are allowed to keep this information as trade secrets. And no one has tested most of these things for health effects, and won't until after people begin to become ill or disabled. 

Last year, a researcher from the MIND institute at UC Davis was giving a lecture on the current research about the search for environmental causes of autism. He spoke of the complexity figuring out what is actually out there in the water, the air, our kid's pajamas, food, pillows, toys, soap... and then trying to figure out effects at different stages of development, and interactions between chemicals. Someone asked the inevitable questions about mercury. He said that he was actually more concerned about BFRs (flame retardents) in pajamas, clothing and furniture. 

Pajamas? What could be safer than the matching cuddly, soft, footie jamas I just got them  for Christmas???

California is attempting to regulate toxins in a new way, similar to the approach that the European Union has taken. In the absence of any reasonable effort by the federal EPA, this state is attempting legislation that would require manufacturers to prove their product is safe before it goes to market. Currently, manufacturers push chemicals to market with little or no testing, and if a chemical is proven to be dangerous (often through lengthy litigation) it is after somebody, or many bodies, have been harmed, some times irreparably.  The testing happens after products to to market, and we are the test subjects.  

This legislation might actually prevent the uninformed experimentation on human and animal subjects that is being pursued nationwide under the current policy.  How novel.

Maybe someday I will know whether I can drink the water in my bucket, or give it to my children.