So, this is interesting.

>> Friday, April 21, 2017

I'm about to admit to being a crap Mom. Not a shock to those of you that really know me apparently. Go ahead and judge.

Four days ago, Bug was seizing and NOT waking up. I thought: we are NOT doing this '80 seizures day thing again! A stimulant will wake him up!" and the search began for his left over Vyvanse. Safe stimulant, I thought.

I couldn't find it.


I opened boxes that I hadn't yet unpacked...I dumped them out all over the bathroom floor and scattered their contents about me to hasten the search.

Another seizure.

Damn it! I then found a bottle of Jet Alert. Caffeine! Caffeine is a stimulant! Had to be safer than Vyvanze really so...I checked the amount of caffeine (about one cup of coffee) and a memory hit me:

When Bug was 3 and not sleeping, neither were we. We lived on caffeine. I had my Coke on the table and got up to use the bathroom. When I got back, Bug was chugging the Coke. I immediately took it from him and swore a couple dozen times. It happens to a lot of parents and it wasn't alcohol so...

30 minutes later he was asleep. He slept for 4 hours. I raised an eyebrow and filed that away for future use: NOT too affected by caffeine and I checked his heart rate. Normal. Good news.

Fast forward to four days ago and waking Bug up.

I gave him the Jet Alert. The only thing I had with me to wash it down was my energy drink so I gave him two 3ml syringes full.

Another seizure. Although not as long or as intense and he didn't make a sound. We were up to 30 or so seizures by this time and I was used to the 30 second Tonics with the moaning and screaming and I thought: maybe they are getting better. So, I got my laptop to do some writing and sat next to him to wait for another. It didn't come and he slept.

He slept for 6 hours! Without a seizure. Then he had one more and was awake! We fed him and he played and smiled and was very pleasant.

It didn't last long. He had more seizures that night and again, was not waking so I broke out the Jet Alert. He slept for another hour and then woke up happy. All day he was happy and playful and not another seizure...then he began to nap around 5pm and had a seizure. I thought: Oh no you don't! We are not slipping into another seizure cycle so I gave him another Jet Alert. I felt like I was pushing it but he woke up and didn't seize. In fact...that night...he didn't seize at all until 6am!

Still, I didn't want to feed my kid caffeine daily (gave him the Vyvanse without concern but the caffeine seemed bad? What?).  He woke up after the second 6am seizure and was awake all day. NO caffeine was given. That night...seized a ton. I mean a TON. I won't count, it's too depressing but the rescue meds only gave us 2 hours of sleep. It was a lot.

That morning, I gave him the Jet Alert with his other meds. By 5pm he was napping again, with the amount of seizures he had, anyone would be tired. He fell asleep in the car. And seized and seized and seized. No matter what we did, he would not wake up! By the third one in 30 minutes I cried and stopped by Target to buy some Vivarin. Nana said he had 3 more seizures while I was in the store. I didn't hesitate giving him one Vivarin. He had one more seizure and then...stopped.

Last night he didn't have any seizures  until 6am. He had one and then woke up. I gave him a Jet Alert with his morning meds.

Tonight he will get another Vivarin at 5 or 6pm and we will monitor him. If he doesn't seize at night again, we will revisit stimulants with his Doctor.

Meanwhile...he needs to poop. I'll get right on that. Ick.


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