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My Daughter just turned 2 and seizures are getting worse.
Sun, 02/27/2011 - 10:02Hi everyone,
It has been a while since I have been on here. I honestly thought things were starting to get better for my daughter. But it seems like her seizures are getting worse and I am worried to death.
Savannah started on Keppra 1ml 2x daily when she was 18 months old for absenc seizures and seizures that would make her eyes roll to the back of her head and left to right (not sure what those are called).
About 2 months ago, Savannah was at Head Start and they said she just wasn't acting like herself. Said she sat down at the table and laid her head down. She would look up but with a blank stare and would not talk or recognize anyone was there. They said that it lasted for about an hour. That kinda make me upset because a seizure lasting that long they should have called me or an ambulance right? Called the neuro and he upped her meds to 1.5ml 2x daily.
Now this is what is worrying me. On the 23rd of this month, while at school, she had another long seizure episode. They said she went to the table and sat down. Laid her head down and again would not talk or even recognize that anyone was there. They said this lasted for a long time. The teacher was worried about her so she picked her up and went with her to the mat. When she sat down with Savannah, Savannah just fell out passed out. They said she stayed like that for a little bit, but with no twitching. She came out of it and went back to the table and sat her head down again. When she came out of it, she threw up everywhere. They called me after all of this happened and I rushed over there (took 30 mins) and when I got there she seemed ok. I took her home and she slept for over 3 hours. Does this sound like a complex partia seizure or another kind? But I called the neuro and they upped her meds again to 2ml 2x daily. They also dx'd some distat for her if she has a seizure more than 4 mins long.
Would that be considered status Epilepticus? I know nothing about this. And with her going to the table both times, do you think she is feeling them or maybe getting an aura?
Then on the 26th of this month Savannah stayed with my mom. She has never saw Savannah have a seizure so she thought that we were crazy! But she finally got to see one maybe.
Mom called me and said that Savannah was just standing there with her head dropped and kept repeating "No! No!" She said that she seemed scared of something and that she kept doing that for about an hour. This is new all around. I am not sure what to do when this happens. Is that considered Status Epilepticus? Should I have given her some Distat to get her back to us? It is hard to know what type of seizures she is having when it is hard to get in contact with her neuro.
When should I be giving her the Diastat and when should I call 911 or take her to the er? Do the last 2 episodes sound like seizures to you guys? I am sorry. I am still new to this whole epilepsy thing and to be honest it scares the heck out of me.
Cheryl
Comments
Re: My Daughter just turned 2 and seizures are getting worse.
Submitted by lwas on Sun, 2011-03-27 - 17:34
Also, about the Diastat, we have that for my son and he has 20-30 seizures during waking hours. His are usually only a minute or two long, but sometimes longer. We were advised to administer Diastat after five minutes of continual seizing or if he has cluster seizures (more than three in an hour). We would be giving this to him literally every single day under those instructions. I think, as a parent, you should go with your gut. Sometimes we know just as much as our doctors, just in a different way. We see the 24/7 aspect of our kid's health. I don't feel comfortable administering that strong of a sedative to my child because he has three of his normal seizures in an hour...he doesn't lose conciousness and he acts normal between them. Good luck to you. I know it is a scary thing to see and you must feel lost, because I certainly do. Oh, and when in doubt, call 911. I'm a 911 dispatcher and most places will send an ambulance free of charge to check on someone. They typically don't charge unless the person is transported (double check with your agency), but better safe then sorry if you are seriously questioning it, right?
Also, about the Diastat, we have that for my son and he has 20-30 seizures during waking hours. His are usually only a minute or two long, but sometimes longer. We were advised to administer Diastat after five minutes of continual seizing or if he has cluster seizures (more than three in an hour). We would be giving this to him literally every single day under those instructions. I think, as a parent, you should go with your gut. Sometimes we know just as much as our doctors, just in a different way. We see the 24/7 aspect of our kid's health. I don't feel comfortable administering that strong of a sedative to my child because he has three of his normal seizures in an hour...he doesn't lose conciousness and he acts normal between them. Good luck to you. I know it is a scary thing to see and you must feel lost, because I certainly do. Oh, and when in doubt, call 911. I'm a 911 dispatcher and most places will send an ambulance free of charge to check on someone. They typically don't charge unless the person is transported (double check with your agency), but better safe then sorry if you are seriously questioning it, right?
Re: My Daughter just turned 2 and seizures are getting worse.
Submitted by jbmom on Mon, 2011-03-28 - 23:23
These do sound like partial complex seizures...my son who is 7 has had them since he was 22 months old, It sounds like you either need to find a new daycare provider or get them some education for the seizures your local epilepsy foundation should offer them for free. My son can usually tell me he is not ok before one starts and often gets him self either to me or a safe place, for example just last week he was swimming at the local Y when he came over to me and said he was all done swimming and sat down next to me and went into a seizure. From what I have learned perminate brian damage can not happen unless a singel seizure lasts over an hour. Our neurologist has given us direction to use the diastat for seizures 5 mins or longer, and for me 5 mins is long enough to watch him seize.
I also learned some key ?'s to ask him to determine if he is out of the seizure....what is your name, who am I, where are you (home, living room, school etc).
It is all very scarey to us as well, my son went from having 4-5 a yr to having 54 in 11 months last yr and so far has had 9 this yr. Good Luck !!!! hope this helped.
These do sound like partial complex seizures...my son who is 7 has had them since he was 22 months old, It sounds like you either need to find a new daycare provider or get them some education for the seizures your local epilepsy foundation should offer them for free. My son can usually tell me he is not ok before one starts and often gets him self either to me or a safe place, for example just last week he was swimming at the local Y when he came over to me and said he was all done swimming and sat down next to me and went into a seizure. From what I have learned perminate brian damage can not happen unless a singel seizure lasts over an hour. Our neurologist has given us direction to use the diastat for seizures 5 mins or longer, and for me 5 mins is long enough to watch him seize.
I also learned some key ?'s to ask him to determine if he is out of the seizure....what is your name, who am I, where are you (home, living room, school etc).
It is all very scarey to us as well, my son went from having 4-5 a yr to having 54 in 11 months last yr and so far has had 9 this yr. Good Luck !!!! hope this helped.
Re: My Daughter just turned 2 and seizures are getting worse.
Submitted by lwas on Sun, 2011-03-27 - 16:24
Have you looked into early onset occipital epilepsy of childhood? Specifically Panayiotopolous Syndrome. Sounds similar to that.