The other night Dawson woke and started to have what we thought was going to be another cluster of seizures just as he has done many times before. But this night it was different..
With each seizure there was a scream. Its very hard to describe,but if I had to, i would describe it like this.... If you can imagine scaring the absolute BeJiggles out of a two year old.. It was that kind of scream. I mean a really really scared and frightened for his life kind of scream..
Not a scream of pain, but a scream of terror.. And he did this with most every seizure during this cluster. I think it was more of a reflex than him being that scared or terrorized.. At least that's what I'm telling myself because it makes me feel better. In between seizures/screams he was fine but those screams.... good grief.
We have never heard anything like that before in our lives and we hope we never do again. It was absolutely sickening and literally made me sick to my stomach hearing and seeing it. Allison bless her, was the one holding him while he was doing it. Needless to say, we didn't sleep much the rest of the night afterwards.. Please Dawson, I know you couldn't help it, but PLEASE never do that again..
We made the decision to restart him on Keppra. Most of you know I hate Keppra because of how it affects his moods. It makes him angry and act out in rage but I have noticed that when he came off of Keppra his seizures were a lot harder. So we are three or four days into restarting Keppra and we can tell a difference. In his mood yes, but also in his seizures. There have been no more screaming episodes and for that we are truly thankful.
Please continue to pray for him as we seek seizure freedom once again.
Love to all
Jeff and Allison
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3 comments:
Oh man guys,my heart just aches for Dawson and for you all.Feeling helpless and having to just sit there and wait it out.I am sure if I know you,you were praying your way through it.Our prayers continue.Focused on seizure freedom.Love from California always.
Man i imagine that just broke your heart hearing those scream...broke mine just reading them. Can't say that connor has ever screamed with any of his, so i don't know??? Glad to hear that the Keppra is helping some. Don't know if he is on B6 or not, but i've heard it can help with the Kepp-rage. Hang in there guys!!! {{{hugs}}}
Hi I am visiting via Kendall's blog.
You sent shivers down my spine I thought it was only my guy that had these we call them the Freddie Cruger spells. Our neuro doesn't know if they are seizures or not we haven't gotten them on an EEG so cannot rule out seizures. Gald to see that Keppra has worked on them.
Ger,Finnian and the Cats in the Bronx
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