seizures

Matthew had been one of the lucky ones that didnt suffer any seizures although hes been on keppra since the dx in july of 2011 for precautionary reasons. we were at the mayo clinic in jax fla friday for a quick 45 min infusion of avastin but by the time he woke up from his nap he was out of it. he could barely stand up, was very confused, couldnt speak, could only mumble and was incontinent by the time we got to the er. this happened at 2:30 pm est and by 11 pm he would just barely open his eyes when you woke him up but he could not focus on anything and wanted to just go back to sleep. he didnt respond to any commands like squeezing hands or nodding or wiggling toes.... nothing. this lasted all night and by 7 am the next morning, nothing had changed. then the dayshift nurse came in and was very caring and i guess had the voice of an angel (im pretty sure it was coincidence) but he started responding to her and slowly started to understand what was going on. but it was after 28 straight hours of sleep before he woke up for about an hour, then for the next 8 hours or so, everytime he woke up he couldnt tell you what his name was or where he was at for about 30 mins each time. woke up sunday morning and even tho i can tell he is still just a little confused he was aloooot better, so they let us go home. they were pretty sure it was a seizure even tho the eeg didnt show it even while he was confused (they did the eeg about 18 hours after this started) but they said the postitcal state that he was in might not show up. has anyone ever had a seizure last this long and have to be hospitilized for it? they acted like it wasnt a big deal, and it might not have been, but we were petrified and just havent had to deal with seizures until now

matt

i forgot to add, before he went into deep sleep, he was picking at the bed sheets and his clothes like he was trying to get a bug off. that lasted a good 15 mins. just constant picking

With my son, Jeff, not in the same way you described.  How scarey this must have been for you and your wife. 

4 1/2 months after his operation , Jeff grabbed ahold of the hanging chandeleer and almost ripped it out of the ceiling he had such violent shaking and fierce grip. This went on for what seemed like an eternity but only about 2 minutes. He did not respond to anything I said during this time, his eyes were glassed over, and his body was stiff as an iron rod, and he was in a daze after I got him to sit waiting for the paramedics to come.  He did not know what happened.  He was hospitalized @ Mass General for observation. We think it was from fluid and swelling. It takes awhile for both to subside after all B.T. patients have been through.   Recently he has had T.I.A.s and is headed for strokes we were told.  We have been repeatedly told Jeffs veins and arteries are very very small and narrow, like a small childs, so he must drink , drink, drink to keep him from getting dehydrated and keep them as open as possible.     I wish I knew a way to prevent strokes, brain tumors, cancer, medically induced diabetis, etc.  I wish there was an easy way to cure cancer.  It will always be in Gods hands. I am glad your son came out of it.    J.

On Dec 03, 2012 6:44 PM bpp30m wrote:

Matthew had been one of the lucky ones that didnt suffer any seizures although hes been on keppra since the dx in july of 2011 for precautionary reasons. we were at the mayo clinic in jax fla friday for a quick 45 min infusion of avastin but by the time he woke up from his nap he was out of it. he could barely stand up, was very confused, couldnt speak, could only mumble and was incontinent by the time we got to the er. this happened at 2:30 pm est and by 11 pm he would just barely open his eyes when you woke him up but he could not focus on anything and wanted to just go back to sleep. he didnt respond to any commands like squeezing hands or nodding or wiggling toes.... nothing. this lasted all night and by 7 am the next morning, nothing had changed. then the dayshift nurse came in and was very caring and i guess had the voice of an angel (im pretty sure it was coincidence) but he started responding to her and slowly started to understand what was going on. but it was after 28 straight hours of sleep before he woke up for about an hour, then for the next 8 hours or so, everytime he woke up he couldnt tell you what his name was or where he was at for about 30 mins each time. woke up sunday morning and even tho i can tell he is still just a little confused he was aloooot better, so they let us go home. they were pretty sure it was a seizure even tho the eeg didnt show it even while he was confused (they did the eeg about 18 hours after this started) but they said the postitcal state that he was in might not show up. has anyone ever had a seizure last this long and have to be hospitilized for it? they acted like it wasnt a big deal, and it might not have been, but we were petrified and just havent had to deal with seizures until now

matt

Hi Matt,

Last October I may have had a seizure, not sure; it was Saturday, October 6th.  (I was in the middle of my 400 mg Temodar cycle, started again October 9th).  I got up around 6 and loaded our van full of recyclables.  Once we got to the recycling center we had to unload -- and sort -- just about all of them.  That took a while . . . a very long while.  Then we ran some errands, and by the time we returned home, I was wiped.  I don't even remember falling asleep.  I did find out later that my wife had to help me back to bed and she was very worried.  I was also confused -- mixed up my girl's names -- and wouldn't wake up.  About the next afternoon I was better, and at the time really didn't remember much of this "event" at all . . . which scared the living hell out of me.  The idea that I could just totally check out like that was truly frightening, even more the tumor.

We saw one doctor on October 16th, told him about it.  He's not my oncologist; just a GP.  I told him that until that day in October if I'd had any seizures I was unaware of them, and the event hadn't recurred since (still hasn't, as of this writing), so he authorized a referral to a neurologist.  We had to jump through some hoops to make that happen, but I have the appointment next Thursday.

The next week we saw the doc in Loma Linda, the next day the Riverside docs, and they were of the opinion that what happened to me in October was I had just plain overdone it and exhausted myself. One doc said it was possible I had a ministroke, or miniseizure, but since I recovered reasonably rapidly, they seemed inclined to go along with "he over did it", which I have a tendency to do. I never seem to learn my lesson :(

Like I said above . . . frightening.  Make sure to ask plenty of questions.  My wife accompanies me to all of my appointments and she misses NOTHING.

How is your son? 

Forgot to mention that I'm not on any antiseizure medications.

Randy 1958, why did they not put you on anti-seizure drugs?  What did they think it was or caused by?  J.

yes it was definitely terifying. it dont help that when things like this come up im always thinking the worst. just cant help it, it just happens. matthew is totally opposite, he is always positive, so i do not let my worrying get in his way of recovery.

J, i totally agree with you, i wish i was sean connery in real life in that movie the medicine man and just find a simple cure like he did to cure everybody with this evil monster. i am so wore out mentally from all the bad things that happen. nothing is more true than the roller coaster ride everybody talks about on this journey. but then again, its not even me whos having to actually deal with it, oh dear God i wish it were me instead of my boy. and i pray for your Jeff too.

Randy i wonder why they didnt put you on any anti seizure meds even for precautionary reasons like they did matthew. guess all docs are different or maybe its the location of your tumor? im glad youre one of the lucky ones also that dont have to deal with them. hopefully that wasnt what your episode was and you dont ever get them. matthew is not quite back to normal but really close. they had him almost off the steroids, down to 2 mgs every other day, but bumped em back up to 4 mgs a day and upped his keppra from 750 mgs to 1500 a day. im just praying this is not a common occurence. i consider myself a pretty tough guy but to see your child go through these things and not be able to do anything about it, is about as helpless a feeling as a man can get. i wish i could just get ahold of cancers ass, i would beat it straight back to hell where it came from

matt

Did they do any scans in the ER?  My husband was one that had a horrible reaction to Avastin, and this seems very similar, and ended up having a stroke after the fact.  Please just watch out for any stroke like symptoms.  I know seizures very well, but the episode that my husband went through like this was not seizure activity.  The NO at the time thought it was as well.

-Karyn

On Dec 04, 2012 1:16 AM karynk wrote:

Did they do any scans in the ER?  My husband was one that had a horrible reaction to Avastin, and this seems very similar, and ended up having a stroke after the fact.  Please just watch out for any stroke like symptoms.  I know seizures very well, but the episode that my husband went through like this was not seizure activity.  The NO at the time thought it was as well.

-Karyn

Karyn, its kinda weird that u mention that because i actually left out that this exact same thing happened about 3 months ago with very few differences when he was dxd with the cancer spreading to his csf. he conitunually tried to roll to one side and almost go into a fetal position and if you tried to sit him up his head would tilt to the same side and his arm would also fold up as if he were putting his hand over his heart. he also had his tounge sticking out to the side the whole time. i just knew it was a stroke. the first time it happened, our neurosurgeon said it was not a seizure, the end was near and it was time to call hospice. a few minutes later he was given a shot of 10mgs of steroids and within 3 or 4 minutes he was back talking and feeling better. that took about 2 hours total. this time it was much longer, completely unresponsive for 17 hours then quite a few more til he was all the way back. i have questioned the whole time whether it was really a seizure or not. he was not on avastin the first time it happened, but its funny that it happened the second he woke up from his avastin this time. they did give him a ct scan after my wife pitched a fit asking them why hadnt they done it already. she was also ticked that they waited so long to do an eeg (which showed no seizure activity). we have not had to deal with seizures but even now i just dont think it was a typical seizure????? all of this just sucks

matt