Saturday, February 4, 2012

Back to Square One...

Things have continued to go downhill the last couple of weeks. It started small, he would have small jerks here and there, full out myoclonic-astatic seizures maybe once or twice a day, and tonic clonics every week or two. Then they got more violent. His drops are knocking him to the floor, his myoclonics are quite literally throwing him back two feet, and tonic clonics are coming every couple of days, and sometimes multiple times a day. We have been waiting so long for Clobazam and we are finally on it, but in the almost two weeks he's been on it he's gotten worse every day. We ended up in the ER twice last week, and one of those trips found us being transferred via ambulance back up to Children's 70 miles away.
They were so sweet, they turned on the lights for him:)
We arrived in the ER and they put us in a room and basically ignored him. It wasn't until he started clustering that they were paying him a little attention. The ER doc came in and started to tell me how they were planning to watch him for a little while then send us home because there was nothing they could do. Just then Ethan went into a tonic clonic and in a flash the room was filled with about 3 doctors and 5 nurses. It's amazing that the seizures we deal with on a daily basis alone require half a dozen hospital staff and oxygen to deal with. The seizure lasted about 10 minutes and was quoted as being "impressive". Right when he started to come out a nurse picked him up and ran him down the hall to the front room where ambulances drop off the most critical cases. He was put on oxygen and cardio leads and once again, we were dropped and left alone. More than an hour later the same ER doc came in to tell us again that neuro wanted to send us home because there was nothing they could do. Mike called the neuro department and talked to them and magically 20 minutes later someone was coming down telling me they had a room for us upstairs.... Just to add, he had Ativan given just a few hours prior at the other ER, and they gave it to him again during his long seizure. He was pretty drugged up at this point, and it still wasn't stopping the seizures.
Waiting to go up.
We got up to our room and got settled in for the night which was pretty quiet, no real obvious seizures to me. The next morning the nurse told me he wet the bed and she changed him out in the middle of the night. This was somewhat worrying to me. He very rarely wets the bed, and when he does we sort of figure it was a seizure. But he had an apple juice before bed, so maybe it was just a fluke. I wasn't sure yet.... The seizures started coming back in the morning. Only now he was having a brand new one. It looked somewhat like an atypical absence seizures, but he would make a funny noise.... And wet himself which he has never ever done during a seizure. That day he had 4 of these episodes where he would wet himself. Neuro was still completely ignoring us. They told us they didn't want an EEG on him because they knew everything about his epilepsy... REALLY???? This was news to us. Sure wish they would share this info with us. Even with a brand new seizure they still said they knew all they needed and he wouldn't be getting an EEG even though in the last month his seizures have increased from a few a month to up to a hundred or more a day.
Still doesn't phase him!
Our frustrations were rising by this point. We were once again pretty much ignored for the rest of the day, and for the first time in years I had to put a diaper on my child to sleep in. The next morning he woke up and the seizures started and did not stop. He was having atonics, myoclonics, and absences back to back to back. He seized for 2 hours straight. I told every doctor on the floor, every nurse, everyone. I told them I needed someone from neurology down immediately and no one came. He quite literally had 200 seizures in 2 hours before an order was finally put in for Diazapam. Having an IV they brought in that form. Of course they go to give it and his IV isn't working. Great. So they ordered the rectal version that took another 20 minutes to be sent up. They gave it to him and he had 2 more seizures then they stopped. Nearly 2.5 hours later they did what I would have done instinctively hours ago. Someone finally came up from neurology and apologized. I was told his primary neurologist was out until Friday, and basically they wouldn't touch him without her telling them what to do. Well great, that's very helpful. Another pediatrician came in and apologized for how everything went. She said he wasn't continuously seizing for more than 5 minutes at a time and the order is to give diastat after 5 minutes... No, the order is 5 minutes straight or more than 6 in an hour. He was having 6 in 10 minutes. I was so fed up. I told them the diastat keeps his seizures away for about 72 hours and since they wouldn't do anything until his neuro came in in 2 more days I wanted to go home. There was no point staying there and keeping him trapped in a bed when we could watch him in the comfort of his home.

myoclonics and absences. They started small and not too frequently, and hour by hour got worse. Last night he was up all night seizing. It is very rare that he has seizures at night, and he was having clusters every time I woke up last night. He got up this morning and it's been non stop. If I told you my child had been up since 6:00 in the morning, and by 7:30 he had over 50 seizures you would probably think I was crazy. That's been our morning. We are living off rescue meds. It seems his regular 3 prescriptions he takes 3 times a day, 13 pills a day  are doing nothing. It's great that the rescue meds stop his seizures. The problem is eventually they won't because his body will get used to them so you're constantly questioning when he really needs them. To make matters worse we had a blizzard yesterday and we're literally snowed in. If I needed to get him to the ER I couldn't. I actually just said to Mike that I should probably hop in the shower and pick up the house in case I need to call an ambulance today. It's ridiculous to even have to think that way. The frustration, stress, and anxiety are very high right now. We're just hoping there is something positive laying in the near future for us.

The type of seizures he's having this morning. And yes, I give him cookies at 7:00 am!:


  1. Just want to offer some hugs. I just can't even imagine.

  2. Perhaps this isn't helpful in your current state, but as an outside occasional reader, it seemed that you seemed more hopeful about life and his seizures during the time you were on the keto diet. I know how freakin' difficult it is, and it's not worth it if it makes your son absolutely miserable, but it seems like you've been off it for 2-3 months and suddenly things are much worse. My son is on a modified atkins which is still hard, but not quite so demanding at the keto and it has worked wonders. I feel the most important for us has been cutting out sugar (we use stevia) and gluten. If there is a way to do just that, it might be worth it. I'm not saying that this diet will stop your son's seizures, but perhaps provide some relief?

  3. Of course you know I found this blog through Kate and I keep up with it regularly. This just breaks my heart and I keep hoping that some breakthrough will occur that will help Ethan and others with the same condition.

    In the meantime, if cookies make him happy at 7am then go ahead and give him cookies. I see posts and photos and I just want to give this kid everything he wants and I don't even know you guys!

  4. Ethan you brave, beautiful boy!! <3

    God bless you guys, and give you rest.

    I know you're super busy, and don't really get a "time off", But PLEASE, I'd love to hear from you soon (and more often). I'm holding my breath, kinda freaking out, I can't even begin to feel your frustration...

    Updates on Taylor too :)
    One can only wonder what that little princess must be thinking when she sees ambulances, blaring lights, and mommy & daddy's worried faces. :(
    If it is hard for us, as adults, to watch a seizing child...through a child's eyes, I can only wonder.

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  7. maggie.danhakl@healthline.comSeptember 24, 2014 at 8:54 AM


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