Like any story, the beginning is a good place to start.
Monday night Becca seemed more or less normal. Maybe a tad like she didn’t quite feel herself. I’d catch her rubbing her head a lot. As she was playing, before she went to bed she randomly cried for a few seconds. David or I had no idea why. I chalked it up to she didn’t quite feel good, probably a headache.
Tuesday morning. I go in to get her for school. Now on a normal day, I carry her downstairs and by the time we are in the den she is waking up good (usually ready to find a few toys). Tuesday, not so much. I laid her on the floor still more or less out cold. I fixed breakfast for us and still, not much reaction. I tried to get her to take a few bites of the cheesy scrambled eggs. No reaction when I put the bite of food to her lips. Normally if she is sleeping, I can put the food there, or open her mouth a tiny bit and once she realizes food is there she will eat. Not on Tuesday.
So at the time I chalked it up to “Well maybe she had a seizure a short time before I went in to get her and she is in a post-ictal sleep” So I let her be.
I sent a message to her teacher we might not there, but if we did make it she would be late for sure. This way they aren’t waiting for her during arrival time in the morning.
I let David know she was having a tough morning.
Over the next few hours she still slept. and slept. She would stir a bit when she had a seizure, and then settle right back down. I took my opportunity one of those times to wake her enough to change her clothes (oddly enough her diaper was still dry). I also helped her eat a banana and have some juice.
She acted like it was too much effort to hold her sippy cup, even to eat the bites of the banana. Seriously – if you’ve ever been really sick with something like the flu, and know how simply moving takes too much energy – that is the look she had. All the while she was laying on the floor snoozing I’d notice she seemed twitchy, her fingers, her hand, her feet. Just random twitches. NOT good. I gave her usual rescue med – but it did nothing.
Since we knew she had been playing with her right ear even more than usual, David and I decided we should have the ped check her. Plus we knew it would be good to have them check her over for some of the basics, before going straight to the ER.
Her right ear had a TON of wax, which they cleaned out. But the Ped and all the nursing staff saw how out of it Becca was and were very concerned. I’m so grateful to have a good Peds office, with staff who know Becca.
So after Visiting Dr. Pickens I came home and gathered a few things. I honestly left Becca sleeping in her car seat in our garage instead of pulling her out and inside for the 10 minutes or so I was inside (slid her door open so she’d have fresh air). Makes me glad to have the garage so I can do that safely.
I gathered some basics for an ER trip.
The ER started out like it always does – you check in, and within a very short time are called back to triage and then a room. I think within an hour, or maybe a little more she already had the CT scan and shunt series x-ray.
Then the waiting, and waiting. Doctors agreed it was concerning how lethargic she was. She did react when you did something she didn’t like – such as try to shine the pen light in her eyes. She could push you away and shut her eyes TIGHT.
The Shunt stuff checks out. Docs seem just less concerned.
I’m trying to push the concept to them this is a non-convulsive status event. Basically that means between all those visible seizures we see, she is having tons, and tons of sub-clinical ones (ones we don’t see).
They seem to think because she is able to purposefully push you away it can’t be that. yet this is the kid who will still try to eat or drink, or play during a typical seizure. There is ZERO reason the same thing couldn’t be happening now.
They give her .25 mg clonazepam. Only because they are so worried about how out of it she already is, that it would make that worse. After 30 some odd minutes (I could not keep track of time) with no reaction they gave the “other” .25 mg (other half of the pill).
Within a short time of this she did perk up a bit. however she was STILL seizing like crazy. I had given her .5 mg in the AM, with no result as I said.
With that much clonazepam in her, she should have NOT been having any kinds of seizures.
They decide to admit her, and monitor on EEG (DUH – hello – they could have hooked up an EEG hours ago).
We get up to a room around 10 or so. As anyone who has ever been admitted to the hospital knows, the check in once you are in a room takes a while. Nurse has a ton of questions, getting things set up, etc. Its close to midnight before I’m able to lay down on the recliner to sleep. At 2:30 the EEG tech shows up to hook her up. Becca sleeps through most of her hook up and overall tolerates that well. Between 4:30 and 5 I go back to sleep for about an hour.
Wednesday was MISERABLE – for me. The AC in the hospital wasn’t working right, so it was warm in there. Not bad if you are “normal” but when you yourself do not tolerate heat at all, it makes you one sick momma. I called David and asked him to come sooner than later, because I was already sick from the lack of sleep. I knew I felt horrible. I was eating ice cubes and rubbing my head with damp towels etc.
He got there and I slept for a while. Enough to help me at least be able to speak coherently again. David went home for a bit to get some small fans for the room, it was that bad. Again, by the time he got back I could barely stand. Even Becca’s nurse could see I was not doing well.
Wednesday evening they hooked up her IVIG – a treatment for her seizures.
Becca was already perking up quite a bit – but they also changed some of her other meds. She was still pretty sleepy though – but considering the amount of seizures she had the day before, it was to be expected. She was at least just sleepy, and not out of it entirely.
Thursday she woke up soo much better! We went for walks in her chair (her Convaid Cruiser wheelchair). We even did TWO laps around the unit with her walking! That is a long walk for her since she isn’t a good walker. All that time and not once did she try to just sit down. Thankfully doctors had rounded, seen how good she was doing, and saw her walking around so well.
We got her second round of IVIG Thursday afternoon and were able to come home.
As I understand things from the Neuro who was on service in the hospital the plan for IVIG is that we’ll touch base with her Neuro and decide over the next month how she does and if we want to continue IVIG. However as I understand IVIG, it would take more than just this one time of treatment (even though it was over two doses, its one treatment). So I’ll likely call her Neuro next week and talk to them.
We never really got answers from the doctors as to what happened. They seemed more worried about other stupid shit. Like how by the time we were in the ER her temp was 101 (it was 99 earlier at the Peds office) . But I knew that the amount of seizures she was having alone would cause her temp to go up. It came right back down with Tylenol. But of course they are assuming its some kind of infection. (as if a UTI could cause a kid to be practically unconscious!)
I’m positive it was NCSE (non-convulsive Status). I was positive that is what it was when we went to the ER.
Our plan today is to sleep and recover.
Thank you everyone for all your prayers through this. They really helped!