Saturday, August 10, 2013

Two in Eight Days

I was just about to let B sleep in his own bed. He was over sleeping with mommy, and my husband was over sleeping with the dog. I was finally starting to relax a teeny tiny bit.

Then Thursday morning happened.

We were on our way out the door to camp. K had a "camp out" that night (kids 7 and above get to sleep over), so the kids ran ahead to get in the car, while I gathered all her stuff, and made my way downstairs.

Suddenly I heard a someone banging on the sliding door at our deck. I assumed one of the kids forgot something, or fell and needed a band-aid (because usually when I tell them to go get in the car, they take it to mean run around the yard). I then heard my husband start running, right as I exited the basement and walked into the garage, where I saw Ben, laying on the driveway, next to my husband's truck.

At first I thought he had just fallen down, but then I saw him convulsing. Exactly the same as the Wednesday before. Another grand mal seizure.

I was better this time, knowing what was happening. I kept my wits about me. I made sure he was safe, and spoke soothingly to him. I told my husband it was pointless for us all to go to the ER, and for him to drive K to camp, and I'd take B. I told him to reassure K, who had been witness to the seizure this time (and who apparently listened when I drilled into her head 1000 times to tell us if Ben started acting weird).

We went to a different ER this time. One affiliated with our pediatrician's practice. I talked to Ben the whole way there, asked him to squeeze my hand, and called my husband, reminding him to please, please reassure K. I was worried about her, too, but knew camp was the right place for her (it's a camp for kids with special needs, 1:1 ratio, they would also help her process what happened. She wouldn't have to sit in the ER for hours. It was the right decision, and she had a great couple days there).

The ER doctor ended up calling our neurologist to let them know B had a recurrence. They took blood to make sure his glucose levels were OK (a seizure can make your blood sugar drop, but the two pieces of Nutella toast B had for breakfast weren't  letting that happen). They watched him to make sure he didn't have another seizure right away. Made sure he came out of it. Same as before.

After several hours we were allowed to leave. B was back to himself, remembering nothing. He asked to immediately go to the store to get the new toy I promised (he has been incredibly spoiled this past week, and I'm completely unapologetic). I slowly started to realize the gravity of two seizures in eight days. What it meant. That we were really in it, now. We weren't lucky enough to be in the "one and never again" club.

The neurologist's office was able to get him in for a sleep-deprived EEG Friday morning, and the doctor called me Thursday night to tell me they'd be starting B on medication. We'd discuss further testing after the EEG was complete. Our pediatrician called me yesterday to go over everything that happened. She was in shock B had another seizure.

Aren't we all.

So, that's where we are. Right now I am just waiting for the EEG results. I had hoped the neurologist would call yesterday, but she didn't. I sent her an email this morning (she'll regret ever giving me that!). I know we aren't her only patient, and I know test results don't come immediately, so I won't page her and demand an answer. There's nothing we can do over the weekend, anyway, and we already have medications and instructions, in case anything else happens. I'll page her Monday morning, if it comes to that.

The medication B was prescribed takes six weeks to reach full dosage, so I'll be on pins and needles waiting for another seizure. Plus, I know these meds don't work immediately, anyway. School starts August 28th, and I'll probably take over transportation to and from school. I don't want B on the bus, and I am not even sure I want him on a special education van, just because we only live about three minutes from the school, and he could end up on the van for 30 mins or more, having to pick up/drop off other students. I want him home with me as much as possible.

We meet with the school nurse before school begins, too. I told the neurologist to provide a detailed seizure protocol, and I'm sure we'll have to add accommodations to make sure B is never left alone. He will have a 1:2 aide, anyway, but he can't be walking around the school alone, or be allowed to play on the playground equipment without being watched. I am hopeful the school goes along everything, and I can send B to school feeling as comfortable as possible (which, admittedly, won't be very comfortable at all).

Not exactly how I wanted to spend our summer vacation, but that's life. Always unpredictable. I'm just hoping this upcoming week is very, very, very boring.


  1. This gives me chills. I am scared for you. I used to babysit a little girl who had seizures, and the only thing I can tell you from that experience is that her entire demeanor, and facial expression would change just before she dropped. We knew about one minute before it was going to happen that we needed to clear the floor, and keep her safe. I hope that B has had his last one, the meds work sooner than they are supposed to and that you get some very clear answers SOON. Thinking of you!

  2. Well, if it counts for anything, I think you are handling it great, doing all the right things and keeping your wits about you. I hope for you that the medication works and that you get answers and that things will settle down for you very soon. Be good to yourself.

  3. I'm so sorry, but am glad you are finding answers, piece by piece. Hugs to you all. Been there. It sucks. But you will make the best decisions for B, of that I have NO doubt.

  4. I'm sorry this has happened. Our 11 year old had about 6 seizures in 2 weeks when she was 6. They started after she started on singular and they stopped after we stopped the singular 2 of the seizures she was in the swimming pool and she tightened up luckily she has 1:1 aide anyways as she's autistic so she was safe then she had silent seizures 2 at school and 2 at home. We believe it was the singular she was never put on medication for the seizures and she had 2 silent seizures a few months later but has never had another one. She did get an EEG but it showed nothing even though it looked like she had a seizure suring the EEG even the tech was pretty sure it was a seizure strange that the EEG didn't pick it up. Its a scary thing to have seizures. I hope that B does not have anymore seizures.

  5. Maybe I'm reading these in the right order by reading them in the wrong order... *crosses fingers for no more*

  6. Sooooooo terrifying. I don't know what makes them start out of the blue like that. I have another friend going through this but her kid is 13 and puberty can bring it on. So random. And scary. And did I say terrifying?