Grand Mal Seizures - Need Help and Information

Macayla had three, maybe four, grand mal seizures recently. It was the first she has ever had. They all happened over a two hour period and we gave her Diastat (valium medication given rectally) and it stopped it. Macayla stopped breathing and turned gray. It was scary. But the Diastat worked exactly the way it should. In less than three minutes she was asleep and the seizures stopped. We have no experience with grand mals and Macayla is immobile so she doesn't seem to jerk as violently as I expected her too. Her eyes just started rolling in circles and her head slowly and rhythmically shook back and forth in the "no" gesture. Her chin moved up and down rhythmically and she stopped breathing. Her arms and legs twitched slightly. I want to learn more from those families that deal with grand mals all the time. I feel very unprepared for these types of seizures and it may be something you cannot prepare for. If anyone has anything to offer, please let us know. Thank you.

Doctors prepared us for the day that Macayla may have big seizures and die or that her airway would become too floppy to remain open and she would go into respiratory arrest. We have talked a lot about that, but nothing prepares you for the real thing. Macayla's grand mals could have been much more severe, but just the 45 seconds she stopped breathing each time was tough enough to watch. We have a DNR (Do Not Resuscitate order) on Macayla because our decision was not to repeatedly intubate and extubate when the end comes because once you start you still have to decide when to stop. Intubating does not change the progression of the disease or its outcome, so we decided we did not want to put Macayla through that repeatedly. However, watching her not being able to breathe was the hardest thing I've had to do and your first response is to call 911. End of life decisions are tough and following through with those decisions are even tougher, now matter which way a family decides to go.