Wow, what a few weeks. Our story started the day after Christmas (12.26.14). My precious 5 year old girl had a seizure while with my mother that day. We rushed her to the ER only to be discharged with "hope this was a one time thing." Not so much, the next morning (12.27.14) another seizure (complex partial approx 1 min in duration). Back to the ER. Testing, overnight EEG, recurrent seizure diagnosis, several types of seizures. Welcome to the wonderful world of Epilepsy folks...
The Nero we saw in the hospital was as confused as us. How could so many seizures just "pop" up so suddenly. No history, bad health, seizures in the past, nothing. Normal healthy 5 year old girl (just tuned 5 in October).
The condition - Our daughter usually has 1 complex partial lasting roughly 1 minute per day PLUS several (20ish on bad day but more like 12 on average) of what we think are absence seizures throughout the day. Absence (we think) she pauses for a few seconds, sometimes has a "be, be, be" noise from her mouth and then snaps back to reality usually 3-5 seconds after. SOMETIMES, these migrate into the complex partials. But not always, usually only once per day do they migrate to what we call her "big ones" which again last about 1 minute.
We started her on 5MG of Lamictal 2X day (12.28.14) on her way up to 25MG 2X day. When we went back to the Nuero two weeks after the hospital visit(s), they decided to put her on Keppra (1.9.15) 1.5ml once a day up to twice after one week, to get immediate control of the seizures (hopefully) until we get up to full strength of Lamictal (takes time at 5MG increases every two weeks) :-(.
Now in lies the dilemma. After our initial dose of Keppra, we thought we saw immediate improvement. I mean for the next 3 days I nor my wife saw and absence seizures or complex partials (1.10.15 - 1.12.15). We thought, wow, this could be the drug that works! Our enthusiasm was destroyed when on 1.13.15 in the afternoon we began to see some absence seizures and then BAM on 1.14.15 she had 3 complex partials in one day. The most so far and the worst day for her yet.
It's 1.15.15 today and we saw one complex in the morning with a few absence before. Gave her the 1st dose of Keppra in the morning (1.5ml/150mg) and will another 1.5ml in evening. Hoping for a better day.
I guess my question(s) are:
>Has anyone had this type of sudden onset with so many seizures/types?
>How did you control the seizures if they are similar to my daughters? I know each patient is different but just curious.
>Any experience with Keppra having an effect after 1st doses but then not working a few days later? Maybe it was just a random period of no activity that wasn't related to the drugs? Seems too coincidental though.
This all just happened so fast and my wife and I are really scratching our heads. I know that's probably the story of most, at least what I have seen on message boards, just crazy when it happens. Especially with no warning! Thoughts and suggestions are welcomed!
Patrick
The Nero we saw in the hospital was as confused as us. How could so many seizures just "pop" up so suddenly. No history, bad health, seizures in the past, nothing. Normal healthy 5 year old girl (just tuned 5 in October).
The condition - Our daughter usually has 1 complex partial lasting roughly 1 minute per day PLUS several (20ish on bad day but more like 12 on average) of what we think are absence seizures throughout the day. Absence (we think) she pauses for a few seconds, sometimes has a "be, be, be" noise from her mouth and then snaps back to reality usually 3-5 seconds after. SOMETIMES, these migrate into the complex partials. But not always, usually only once per day do they migrate to what we call her "big ones" which again last about 1 minute.
We started her on 5MG of Lamictal 2X day (12.28.14) on her way up to 25MG 2X day. When we went back to the Nuero two weeks after the hospital visit(s), they decided to put her on Keppra (1.9.15) 1.5ml once a day up to twice after one week, to get immediate control of the seizures (hopefully) until we get up to full strength of Lamictal (takes time at 5MG increases every two weeks) :-(.
Now in lies the dilemma. After our initial dose of Keppra, we thought we saw immediate improvement. I mean for the next 3 days I nor my wife saw and absence seizures or complex partials (1.10.15 - 1.12.15). We thought, wow, this could be the drug that works! Our enthusiasm was destroyed when on 1.13.15 in the afternoon we began to see some absence seizures and then BAM on 1.14.15 she had 3 complex partials in one day. The most so far and the worst day for her yet.
It's 1.15.15 today and we saw one complex in the morning with a few absence before. Gave her the 1st dose of Keppra in the morning (1.5ml/150mg) and will another 1.5ml in evening. Hoping for a better day.
I guess my question(s) are:
>Has anyone had this type of sudden onset with so many seizures/types?
>How did you control the seizures if they are similar to my daughters? I know each patient is different but just curious.
>Any experience with Keppra having an effect after 1st doses but then not working a few days later? Maybe it was just a random period of no activity that wasn't related to the drugs? Seems too coincidental though.
This all just happened so fast and my wife and I are really scratching our heads. I know that's probably the story of most, at least what I have seen on message boards, just crazy when it happens. Especially with no warning! Thoughts and suggestions are welcomed!
Patrick