Wednesday, January 7, 2009

Autism and epilepsy

According to National Institutes for health, nearly one third of people with autism have epilepsy. This is the case with my daughter, and some of her friends as well. 

Epilepsy is a poorly understood phenomenon among the general public, and for many people, witnessing seizures is frightening. We have had enormous difficulty finding day care for our child because most sitters and agencies are fearful-- not unprepared-- to handle a child with epilepsy.

The current policy in California's education code, which requires a licensed nurse to administer Diastat during a seizure and prohibits non-licensed persons (including first responders) from giving it, increases the stigma around epilepsy and creates legal barriers to community activities (like field trips) and settings (like recreation programs) for children with epilepsy.

Diastat is valium suspended in a gel and administered rectally (uh, blush, blush, in the bottom). Nurses apparently do not object to Ativan delivered sublingually (given under the tongue)-- same drug, different route. Ativan given under the tongue during a seizure increases the chances of choking, aspiration and secondary pneumonia. It simply is not safe. Our doctor reacted by saying "are they trying to KILL her?" when we explained the situation to him. Diastat is the most effective, safest emergency medication. It just has to be delivered through the rectum and that is, well, embarrassing, perhaps. The nursing position statement is quite clear that student privacy is an important issue to nurses. 

Personally I don't care how many people see my kid's bottom if it means she won't choke to death. Maybe I am just insensitive. 

Parents have confided in me that they do not tell providers that their child has epilepsy until the last possible moment (walking out the door) because they would never be able to hire anyone. Parents also have chosen to use less safe emergency medication (Ativan) in place of Diastat, in order to get around the nursing requirement in the Ed Code.

This policy is also looked to by Regional Centers and daycare centers. It means that children with epilepsy are often barred from participation in community settings unless they are attended by a nurse-- an unnecessary financial burden and barrier. 

Please join us in contacting you local school boards and legislators to have this policy changed.