the next day.....

Mason improved by the hour all afternoon and evening. Seizures lessening and he became more like himself. Sometimes it drives us crazy when he is chattering non-stop and asking questions. "what dis?" "why?" is what we hear A LOT!!! (anyone who has ever hung out with a toddler knows what I'm talking about!) But it was wonderful to hear him say it again this evening, after he said very little in the last almost 2 days.

This was his worst case of status he's had.

He was still having a fair number of seizures this evening, but nothing like yesterday and he had no signs of status. :)

He settled into bed quite nicely and fell asleep sometime after 10. But he did sleep until noon today!

I plan on putting him on the bus for school tomorrow. Keep to his regular routine as much as possible.

God IS Sovereign and nothing happens without Him allowing it or causing it. He IS in control. He IS the one I trust.

Mason in ER

After a 4 hour sleep the night before, Mason went into non-convulsive status around 9 am Saturday morning. Hoping it would end on it's own, we waited it out. But when he couldn't fall asleep in the evening (because of the constant state of seizure his brain was in), I called the neurologist-on-call at Children's Hospital. She was quite insistent that we call 911. Rather than traumatize Mason with an ambulance ride, we decided to drive him in around 11pm. So we rallied the troops, Uncle Tony and friend Adriana to meet us at ER. It takes 3 or 4 of us to hold him down to put the IV in. Around 2 or 3 am after several hours on IV fluids the status started to settle a bit and we were home by 4am. Mason fell asleep quickly and we both slept until noon. Although he woke up several time with seizures and to go to the bathroom. We keep an extra mattress under his bed for when we need to keep a close eye on him at night.

While in status, he was very quiet, had a low husky voice, and was in a slow-motion state, sow walking, slow movements, etc. We didn't hear him laugh or say very much at all. His face looked like he was very high on drugs. He was quite He's normally quite a chatter box, and his voice volume does not turn to low very often. As well as being in status, he was having Tonic seizures several times an hour, increasing to having one every few minutes.

So right now, Sunday afternoon, Mason is having a play date with his friend Greg, playing wii. He is getting more and more alert by the hour. :) still having a seizure every few minutes earlier in the afternoon, but the state of status epilepticus is GONE!! :) Now, almost dinner time, he's getting noisier and having even few seizures. I'm not paying close attention because he's having too much fun playing!!! I now hear him talking a lot more, getting noisy, face is looking much more alert, and lots of laughter!! :) And he's getting bossier. :) And a lot more active.

Mason randomly has non-convulsive status epilepticus. Unfortunately for him, the meds that normally stop the status don't work on him. On many meds, he has paradoxical reactions. Example: when they gave him Valium, instead of putting him to sleep, it made him super-beyond-belief hyper. Status in Mason is usually triggered by slightly raised body temperature, or slight fever. The raised temperature induces status, and being in status raises body temperature. Vicious circle. IV fluids help to cool down his body and break that cycle. Advil used to work. Sometimes it's hard to tell when he's in status or just having a lot of seizures. There is a difference though!

Here's a link that explains status simply:

http://en.wikipedia.org/wiki/Status_epilepticus

The staff in ER last night were amazing!!!! Especially compared to last April when they wouldn't listen to me at all!!!

The bloodwork that we had done on Thursday went as well as can be expected :)

So that's my educational input for the day!! Thank you for your prayers. It's been quite a week!

Shirley & Daryl