Monday, November 01, 2010

Novemeber is National Epilepsy Awareness Month!

November 1 begins National Epilepsy Awareness Month. The color for Epilepsy Awareness is purple. Each year, I try to post information to help advocate and promote epilepsy awareness and to help educate everyone on what to do during a seizure emergency.

Recently, Jenelle had a 9 minute tonic clonic (grand mal) seizure at school. She was convulsing, foaming at the mouth and non-responsive. A grand mal seizure is not a typical seizure for Jenelle; she has had maybe 7 grand mals in her lifetime. Like an earthquake, there is no way to predict when it can happen, so the best advice is to be prepared. We have a seizure plan in place with Jenelle's school that describes certain procedures to be taken when Jenelle has cluster seizures (small seizures that come on one after another that total 15 minutes or more in a 20 minute time frame) or a prolonged tonic clonic seizure lasting more than 5 minutes.

The written plan in place involves administering Diastat to stop the seizure. Diastat is prepared dose of Valium designed to be given rectally. Jenelle has had a prescription for Diastat since she was 2 years old. Our entire family has been given instructions on how to administer Diastat. Diastat is designed for administration by a non-medical professional, and it has been approved by the FDA for such a purpose. Diastat has kept us out of the emergency room on many occasions.

During her 9 minute seizure, Jenelle did not get Diastat. Her grand mal went 4 minutes longer than it needed to. This because in California, the Board of Registered Nurses ("BNR") issued a directive in September 2009 advising school nurses statewide not to train teachers and other laypeople to administer Diastat. An excellent article from the Orange County Register in January of this year discusses the intricate complications the directive from the BRN has caused for families of children who suffer from seizures.

When the Directive came down last year, the Orange County Department of Education hired a registered nurse to be on site, or within a short distance of campus should Jenelle have a seizure emergency. We were OK with this. As it happened, Jenelle's nurse was not on site the day of her 9 minute seizures, and out for a personal medical issue. The timing just worked that way that day, and I don't hold any anger against the nurse or the school. The problem is bigger than that, and in my opinion is a direct result of the BRN's directive in September 2009. Lives are at stake, and the BRN's stance on this issue is simply a time bomb ticking.

School nurses are in fear of losing their license if a special needs teacher, or other lay person (including a paramedic) administers Diastat without their presence. These are the same individuals that used to be allowed to administer Diastat prior to the BRN's Directive. What ever happened to the law that protects Good Samaritans in an emergency? What does this mean for parents who routinely administer Diastat to children? I know that I could not stand by and watch Jenelle seize; hoping to God it isn't the seizure that takes her from us.

Senate Bill 1051, written by Senator Robert Huff of Orange County, has been introduced to the California State Legislature, and is currently in process. You can find the most recently amended version of the proposed statute here. This bill would allow lay persons to administer Diastat after proper training and instruction. If this bill fails, it would potentially risk the lives of many who suffer from epilepsy from gaining access to necessary emergency treatment.

While our state legislature takes its time in passing this urgent legislation, and the BRN continues to stand on it's directive (that is more about a union trying to saving jobs, than it is about the liability of administering Diastat by a lay person), persons with epilepsy remain vulnerable.

Any seizure that lasts longer than 5 minutes is an emergency. A seizure that lasts longer than 20 minutes can cause permanent brain damage. Seizures left untreated can lead to status epilepticus (permanent seizure state) and in rare instances, death.

What exactly is a seizure? Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.

According to the Epilepsy Foundation, when the following conditions exist, immediate medical attention is necessary:

Brain infections
Heat exhaustion
High fever
Head injury

An un-complicated generalized tonic clonic (grand mal) seizure in someone who has epilepsy is not a medical emergency, even though it looks like one. It stops naturally after a few minutes without ill effects. The average person is able to continue about his business after a rest period, and may need only limited assistance, or no assistance at all, in getting home. In other circumstances, an ambulance should be called.

When to Call for an Ambulance

No Need to Call an Ambulance if medical I.D. jewelry or card says "epilepsy," and
the seizure ends in under five minutes, and consciousness returns without further incident, and there are no signs of injury, physical distress, or pregnancy.

An Ambulance Should Be Called if:

The seizure has happened in water;
There's no medical I.D., and no way of knowing whether the seizure is caused by epilepsy;
The person is pregnant, injured, or diabetic;
The seizure continues for or a second seizure starts shortly after the first has ended; and
Consciousness does not start to return after the shaking has stopped.

If the ambulance arrives after consciousness has returned, the person should be asked whether the seizure was associated with epilepsy and whether emergency room care is wanted.

So what can you do about Senate Bill 1051 and the Diastat issue? Write your representatives. Urge them to pass this necessary law. Write to the Board of Registered Nurses. Tell them how you feel they are endangering the lives of innocent children who suffer from epilepsy. Here are some links and addresses to help you:

California State Senate

California State Assembly

California Board of Registered Nursing

Board of Registered Nursing
P.O. Box 94421
Sacramento, CA 94244-2100

Please share this information with your friends and family, and remember that epilepsy awareness month is a time to speak up for those who cannot. Every moment lost to seizures, is a moment lost in development. For more information on epilepsy, please check out these sites:

Epilepsy Foundation

Talk About It

Epilepsy Support Network of Orange County


Mommie2my4Angels said...

Such a well written blog I hope you get the supposrt you need! As an adult with Epilepsy I can relate to the cause my heart breaks at the thought of watching a child in such a vulnerable state :( You are an amazing mom!! Thank you for spreading the word!!

Rachel Wilkins said...

This is really hard to comprehend & I'm sorry that is something you, Jennelle and so many other people are having to deal with currently.

Have you ever considered or been offered the option of sublingual midazolam instead of rectal valium for emergency seizure treatment? I work in a facilities for kids with disabilities, many of whom suffer from epilepsy and they are all on a sublingual midazolam protocol in case of prolonged seizures, which was overhauled from the rectal valium a few years ago. It certainly has it's benefits - simpler, easier administration and there's evidence to suggest faster post ictal recovery.

Vicky said...

awww i'm sorry :( i too had a grand mal at school that lasted 8 minutes and had to go to the hospital, never fun. i hope things get better for you guys

dluvscoke said...

Good to know. I think I will post something about it on my blog to make others aware, since my son is going through tests for seizure control.

Kim said...

awful story, wonderfully written (just getting caught up here) very informational!
we send lily with klonopin wafers that are given orally. i think it works just as well and it seems to cause less "issues" with schools and respite workers. not the issue i know, but to help janelle in case this happens again.

Elizabeth said...

I am on the board of the Epilepsy Foundation of Greater Los Angeles and have been helping to work on this issue.

It's so damn frustrating -- verging on unethical because it's POLITICS getting in the way of children's lives. Ugh.

Thank you for posting about your experience -- and thank God, Jenelle is all right.