We were back in the ER this morning.
Emily starting having her spasms at 3:35am and then very quickly started having clusters of seizures. It started out with very short seizures, 30 minutes in we gave her ativan, we repeated 30 minutes later because they were getting stronger and more frequent. I called the on call neurologist because it was now 5am and she was not letting up and she also began have clonic/tonic seizures, most people would recognize them as "grand mal"
We were told to give her diastat (rectal valium) and call ems because she had so much medicine in here and we live so far away from the hospital. By the time ems got here she had over 30 seizures with almost half being the "big ones"
*Let me take this moment and vent about the ems worker that came. We have had her before but Emily was not as bad then. First thing that made me mad was she refused to let me stay in the back with her. She said I could not "handle" some of the procedures (starting an IV). So I quickly told her NO SUGAR! No dextrose, glucose of any form!!! She did not understand (HELLO that is why I need to be in the back with you Einstein!) Not many health professionals know much about the ketogentic diet and those that have heard of it know very minimal info on it. I then proceeded to tell her that Emily is a very hard stick to get an IV started and unless you must please wait for the IV nurse in the ER (they know her) to do it. She again did not listen to me and tried. Yes I said tried because SURPRISE she could not get it! We wasted 10 minutes setting in my road doing this! She gave her 2 IM (shots in the muscle) shots of valium on the way and checked her blood sugar and I pretty sure she used the biggest needle they make to do these two things because of the marks they left on her!
So to sum up this ambulance trip-It sucked!!
The ER knows Emily pretty well know and they are always very pleased with our record keeping. We keep a daily journal of all of her medicine, feedings, diapers, spasms, seizures, ketones, blood sugar. We would be so lost without that journal!
They checked her phenobarbital level and it was low so they increased her dose and made us stay a few hours to make sure she responded ok to it. They said that feeding food was fine so tonight we gave her one meal instead of two so we will see if we stay home tonight.
Praying for a good night, now off to watch Glee!
*Let me add something to the above rant. First I am so thankful to have EMS be able to come and pick us up and safely get Emily to the ER. I don't want anyone thinking otherwise. I just wish that they would listen to me. I am the mother of a child with a rare seizure disorder and an even more rare diet. I know more about Emily than they do. I do not know more than her (medically speaking) but I can hold my own I worked in a hospital for 8 years, I picked up a few things. I am not the average "oh my gosh something is wrong with my child, what could it be!" kind of mom. I know what is going on with Emily. This is our 4Th experience with EMS and 3 have been ok, just in combination with everything else it was too much!