Connor had another seizure today.
He was sitting on Jeremy's lap this afternoon when it started. We rushed him to his bedroom, laid him down, and hooked him up to his oxygen. Jeremy only had to give him one breath before he came back; the whole thing lasted about a minute and a half, which was good. Unfortunately what this seizure means, however, is that upping Connor's medication didn't work, his seizures are still uncontrolled, and if we don't move fast to get them stopped things could go downhill really quickly.
I've been reviewing Connor's seizure history on the handy chart I keep of this sort of thing (this was seizure number 35 since April of 2008, when they started, and he's stopped breathing for ALL of those) and I'm noticing a disturbing trend. The amount of time it takes before Connor starts having seizures again after a medication change is getting progressively shorter. When he was first put on Keppra, we went 150 days without another seizure. This number slowly decreased until by the time we added Trileptal, in January of this year (after the kid went Status epilepticus (SE) on us and ended up hospitalized), he was having another seizure a mere nine days after a medication adjustment.
After the Trileptal was added (and upped substantially after a small dose didn't do the trick) he went 72 days without a seizure. This number has once again slowly but surely decreased. We adjusted Connor's medication again a mere six days ago, and here he is, having another one. We've called the doctor to see what he wants to do and we haven't heard back yet.
If Connor follows the same pattern as he has over the last two years we're working towards another round of SE and another near-death experience. Once Connor's seizures gain momentum it seems really difficult to slow them down until we hit a crisis and he ends up in the ICU. It's like watching a train wreck about to happen and being powerless to stop it.
Send us good thoughts, people. We could use them over here.
~Jess
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5 years ago
16 comments:
Connor, man. Jessie, you're so organized. I hope you guys can figure out a solution before it gets worse. Prayin' for yall.
Sending good thoughts. I'll call you soon to hang out and maybe I should come to you? Let me know if you need anything at all! I can bring chocolate! Or even chocolate cheesecake!
We're sending good thoughts to young Connor and his parents.
Oh Noooooooooooooo.
Praying for you all,
Julie
So sad to read this. :(
I'm hoping they can find a solution that is satisfactory for all of you, most especially Connor. Until then, I'm sending my very best thoughts your way.
WOW must b scary for u all coz its scary when i read LOL hope ur house is going well and ur garden if i ever come to a charge conf over near u im coming to help you in that garden
Not good not good. Maybe Master Connor needs a proper talking-to (or signing-to) from Aunt Julia about how this has just got to stop, as in now, pronto, no more seizures. I might have to fingerspell seizure, but I could probably get the idea across. I just wish there were something I really could do to help. Well, give him a hug, and I'll be sending good thoughts all day.
All the good thoughts in the world for you <3
-Jing
oh man, hang in there. I hope that the ICU is not in the cards this time!
So sorry honey. Wish I had some good words of wisdom, but I don't.
Keeping Connor, and you & Jer too, in my thoughts and prayers. Is Connor too young to be a candidate for VNS? Or do his seizures have to reach a certain frequency/duration? Hoping & praying his docs can get this under control. Like, NOW.
I am so sorry to hear this! Praying that you are able to come up with a plan to get control of these seizures NOW.
Hi there! I found your blog on Hopeful Parents. I read it frequently and think of your sweet Connor often. I feel compelled to comment today since my little Ben had another seizure this morning, his third since September. His other two turned out to be febrile, but this one was petite mal. He has a rare neurological disorder that will mean seizures and medications in his future, probably beginning in his pre-teen years. Meanwhile, his general seizure threshold is lower than average.
Just wanted to say that I'm hoping for the best for your family and that you inspire a lot of people with your determination, honesty, and wit!
Oh. I don't know what to say. I'll pray. I'm here if you need to talk. I'm so sorry.
I'm so sorry to hear that Connor had another seizure. I'm keeping you in my thoughts and hope for better days ahead.
What seizure meds is Connor on - just the Keppra and Trileptal? My daughter has uncontrolled seizures also, and is currently on 4 medications.
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