Monday, May 23, 2011


The reason for my extra computer time is that I have had some sick little people at home just now. Lucy's epilepsy has been less than stable shall we say, Jess has a throat virus & today we have Caitlin, the married daughter here sick as well, being ever so careful not to invoke a seizure as that would mean the chance of a drivers license would be set back about another 2 years. The computer is next to the couch so they are there and I am blogging away happily in between calls of "mum can you get me, and feel my head!"

Recently in our local newspaper they ran an article on how a mother had picked her daughter up from daycare & whilst traveling home the 1 year old had a seizure or febrile convulsion.
The article was so poorly written and so full of dangerous miss information I had to do what I have never done before and write a letter to the editor. This is some of what I wrote.

"I just want to say how disappointing it was to read the story “Mum’s skills save baby”. While the essence of the story about the need for first aid training is important and the scare Mrs ............ must have experienced is very frightening, you have allowed her to perpetuate a dangerous myth about seizures. While the child’s tongue would be “stuck in her mouth” because that is in fact where it is meant to be, it is a myth that that has anything to do with a blocked airway which is what the mother implied in the story. People do NOT swallow their tongues! People reading this could assume that you do in fact have to hold the tongue down so as to not swallow it. This is a dangerous myth that parents of, and people with conditions such as Epilepsy have spent a long time dispelling.

You also generally don’t have to administer CPR to someone having a seizure. The blueness in the face is caused by air being dispelled from the lungs during the actual seizure. You place the person in the recovery position and make sure the person is free from harm and time the seizure. Once it has ended the person usually begins breathing on their own and will more often just go to sleep. Don’t give CPR during the seizure. That is very dangerous and actually quite futile.

I have 2 daughters with epilepsy, one 20 & one 5, I have been doing this for a long time (20 years), have had to call 000 more times than I can count and have had to administer CPR as they have failed to begin breathing at the end of a long seizure. Mrs............ "auto-pilot" as she put it, may have been more dangerous than 000. I’m not sure if it was the way the story was written as both the journalist and the parent are only speaking from this one experience, but I can tell you that it was a very misguided, inaccurate article. I hope you will run another story in the near future to dispel the very dangerous myths and inaccuracies that occurred in this story. I am not inferring as a contradiction to Mrs ............. story but just a story on what you should do and highlight the information from the Ambulance Paramedic.

It has taken years for people to learn that when a person is having a seizure you don't stick a spoon in their mouth or anything similar. I was shocked that this story even made it to the paper and obviously they do not have a fact checker.

Some time ago I wrote an article for an American blog site Or So She Says on Epilepsy Awareness with facts and more information on our story & Epilepsy itself. It is handy to have some knowledge and it has links to other info if your interested.


Kids and Canning Jars said...

OK- I just found your blog. I home school, We are LDS and I have a daughter with severe Epilespy! Common ground? I think so.
Looking forwarding to getting to know you all!

Kim said...

Nicely done! And that was last week with Lucy wasn't it - or is this week just as bad? And if so shouldn't you be cancelling Friday and giving me your Saturday morning?