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. 

Decompression

We recently got a phone call from a family who was struggling with decompressing their child through the feeding tube. I would imagine that most families find little tricks that work best for their child, but in hopes it will help more people, I can share what works for us. We have found that most pediatric surgery offices do little to train their patients and their families with their new feeding tubes. So, with Macayla, we have worked with a Genie, a Bard Button, and now a Mic-Key button. Each has its own advantages. We love the Genie's design, but changing it is painful. The Bard Button was a leaking disaster for us but it is very flush to the skin. The Mic-Key is great because it can be changed out at home with little discomfort and the connectors lock on. There is also an extra port on the connector to push meds through without having to disconnect the feeding pump. It does stick up above the skin more than a Genie or Bard Button.

As far as decompression, we hook a longer connector to her (24 inch) with a 60 cc slip-tip syringe connected to it without its plunger. We lean her back in her chair or lay her back in the bed near the edge. Then we hold the syringe down below her to let gravity take over and draw everything out of the stomach. I do tilt the syringe over enough to help flow but not so much that fluids would spill out of it. Sometimes it helps to have a cup to pour excess in if necessary. However, we have always been advised by our doctors and nutritionist to never dump the fluids that come out because they are much needed electrolytes. We put all the fluids back in. The only exception to this is if we get a bunch of blood out. Typically, if the syringe is getting full and there seems to be more air, I will sit Macayla up and then let the fluid run back in. Then I will tilt her back again and once again lower the syringe down below her to decompress again. Letting the fluids run back in while she is sitting up seems to help reposition the air closer to the tube. We sometimes push on Macayla's stomach gently to assist the air out. We point the open end of the syringe away from us as Macayla has sneezed before during decompression and it turns the syringe into a mini-canon that fires stomach contents! Yeah, it's gross. We have found that Macayla needs to be decompressed before every feeding and sometimes between feedings.