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13 year old 2nd time Seizure
Fri, 03/30/2018 - 23:35Topic: Share Your Story
My daughter had a first time seizure 1/8/18 was taken to the hospital , had blood work and a ct scan done with everything coming back normal , so we went back to normal life then on 3/15/18 5 days before her neurology appointment she had a 2nd seizure, only this time she had 2 seizures where she was staring at me and her eyes started to twitch for about 20 seconds then she snapped out of it only for it to happen again right after and then snapped out of it , she started saying how weird she felt and her heart was racing when she went in to a full seizure for about 2 minutes , she was taken by ambulance to our children's hospital and was just released with no new testing not even a urine sample , so we went to her neurology appointment on 3/20/18 and they prescribed her with keppra , now she doesn't have a mri appointment until 4/20/18 and an EEG for 5/17/18 so shes been on the keppra for about 10 days now and so far the side effects are kicking her butt , every day she comes home from school exhausted having to take a nap , my daughter is a competitive soccer/track/cross country player and shes never tired so seeing her so sleepy and out of it is just breaking me ! I'm so confused on how my perfectly healthy 13 year just starts to have seizures out of nowhere , I'm terrified that doctors just want to give medication before knowing the reason but then again I dont want her to have another seizure , is anyone else going through the same thing ? Have any words or answers or suggestions? I feel so alone and broken as her mother not knowing if I'm making the right decisions with the medication? I know its only 10 days but does it ,will it go away ?
Comments
That’s a lot to go through.
Submitted by Amy Jo on Sat, 2018-03-31 - 12:38
That’s a lot to go through. It’s a big shock. It’s going to take a while to process. Our youngest has epilepsy. There are many parents who drop in here but your local epilepsy foundation affiliate may have groups that are for parents or teens.Know that most seizures are not emergencies so emergency departments aren’t the right place for diagnosis of epilepsy. Repeating any tests done after the first episode is not productive here, the care needs are not something the ED is set up to treat. Some seizures are emergencies so learn what to look for.Sometimes the first indication people catch is when a bigger seizure occurs but there are many cases where smaller seizures were occurring regularly but no one recognized them as seizures because seizures can look like so many things. Getting the full picture can be slow or frustrating. EEGs can be clear in someone with epilepsy, esp if they are on medication. Side effects can abate as the body gets used to meds, or might never stop. You can ask the doc how long to fully trial each med. Most people get control with meds and ideally their docs work to find them a medication that has the least impact on their quality of life.There are certain ages where a number of epilepsies start and puberty/teens is an age many start. It’s also an age where some stop or get worse. Hormone changes, stress, poor sleep and other issues can lower seizure thresholds.
few last comments do not stop
Submitted by Amy Jo on Sat, 2018-03-31 - 12:38
few last comments do not stop medication without working through the neurologist - epilepsy meds that are stopped abruptly can trigger more seizures.denial of epilepsy causes a lot of problems, and after two reasonably sized seizures (or one seizure with indications on EEG) epilepsy is the likely case. imaging is often clear. there is no single test which can confirm or exclude epilepsy definitely - EEGs can be clear even for someone not taking meds who has epilepsy.
That’s a lot to go through.
Submitted by Amy Jo on Sat, 2018-03-31 - 12:30
That’s a lot to go through. It’s a big shock. It’s going to take a while to process. Our youngest has epilepsy. There are many parents who drop in here but your local epilepsy foundation affiliate may have groups that are for parents or teens.Know that most seizures are not emergencies so emergency departments aren’t the right place for diagnosis of epilepsy. Repeating any tests done after the first episode is not productive here, the care needs are not something the ED is set up to treat. Some seizures are emergencies so learn what to look for.Sometimes the first indication people catch is when a bigger seizure occurs but there are many cases where smaller seizures were occurring regularly but no one recognized them as seizures because seizures can look like so many things. Getting the full picture can be slow or frustrating. EEGs can be clear in someone with epilepsy, esp if they are on medication. Side effects can abate as the body gets used to meds, or might never stop. You can ask the doc how long to fully trial each med. Most people get control with meds and ideally their docs work to find them a medication that has the least impact on their quality of life.There are certain ages where a number of epilepsies start and puberty/teens is an age many start. It’s also an age where some stop or get worse. Hormone changes, stress, poor sleep and other issues can lower seizure thresholds.