new to epilepsy - daughter had 1st recognized seizure last week

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10/23/18 Hello all. I am new to epilepsy and trying to get up to speed on all of the terminology, treatments, prognosis, etc. I'd like to share my story with you and I have some questions that I'm hoping you can help me answer.Last Tuesday my 7 year old daughter came home from school not feeling well. Our nanny took her temperature and it was 101*. The nanny left my daughter in her bedroom and went to get some ibuprofen. Upon returning to my daughter's room she noticed that Kylie was sitting in her bed staring at her pillow. When the nanny tried to prompt her to take her medicine, Kylie was unresponsive. Nothing could get her attention. So the nanny called 911. Paramedics arrived to the house and loaded Kylie up in the ambulance. At about that same time my wife and I got home. We ran to the ambulance to find Kylie laying down. As we shouted her name, she didn't respond. On the way to the hospital, approximately 45 minutes after the seizure started, Kylie sort of came to but was very confused. She was admitted to the hospital. In the hospital they took fluids for testing. She was diagnosed with strep throat and immediately started on antibiotics. The next day she had a 30 minute eeg. During the hyperventilation phase of the eeg she registered abnormal brain activity. The first eeg was followed by an MRI on her brain, which thankfully came back normal. The next day she had a longer, overnight, eeg done. The longer eeg appeared normal during the initial hyperventilation and strobe test, but at 3:00 am as her ibuprofen was wearing off she again registered a blip in the radar followed by 2 or 3 additional blips at 7:00 am and then again later that morning. The doctors have diagnosed her with epilepsy and absence seizures. They prescribed a medication called Kepra and said that it is a 2 year regimen after which time she will then do additional testing to see if the abnormal blips in the eeg have gone away. After 3 days in the hospital we were released. A couple of days later the fever went away and we sent our non-medicated child back to school while we have sat on pins and needles just waiting for a call from the nanny or school telling us that Kylie had or was having another seizure. At first I was against a 2 year regimen of medication. It seemed like strep and the fever could have played a huge role in her seizure. In my mind, if we eliminated the fever the risk of seizure would also fade. Then I started researching. Absense seizures typically last 2-10 seconds. They can happen up to 50 times a day. Often times they go unnoticed by parents/teachers, and if they are noticed they are typically confused with daydreaming. In a study I read about, only 6% of seizure activity was noticed by parents who were actively watching their children for seizures. I also became aware that if the seizures are diagnosed and treated with medication prior to puberty, most of the time the seizure activity goes away in adulthood. So today we are going to fill the prescription and start 2 years of medication. Have you or someone you loved gone through a similar situation? What was the prognosis? How do you identify when this person is having a seizure if it is a 2 second seizure? Is there any wearable technology that can assist with the identification of the seizures? What types of things do you notice now that you may have missed prior to the diagnosis?Why do they stop associating feberal seizures with children after they turn 7? My daughter turned 7 in July. If this seizure would have happened in June, would she have been diagnosed with a feberal seizure or would the abnormal eeg still led to epilepsy diagnosis with absense seizures?Do absense seizures have a signature? Can you diagnose absense seizures from the abnormal blips in the eeg? Do grand mal or tonic/clonic seizures look differently on the eeg?What types of side effects have you noticed with the medication? How has the medication changed your life/their life? After the medication, does school seem easier? Other than the obvious (scuba diving/cliff jumping/etc.) what activities have you stopped doing? Does strenuous exercise, like playing soccer, contribute to seizures or lower the threshold for having a big seizure?Have you made it through 2 years of medication in your prepubescent years and then had a normal eeg? Did you stop medication altogether? Have the seizure issues come back?If you were in my shoes, what steps would you now take?I'm sorry for misspellings and if I have used any medical terms incorrectly. I am new to this and learning. Thanks for any and all info!---Kylie's Dad

Comments

Prognosis is very dependent

Submitted by Amy Jo on Tue, 2018-10-23 - 14:48

Prognosis is very dependent on type of seizures, age of onset and other factors - while many kids with absence have similar (good) trajectories, some people don't. Keppra isn't the most common first drug for absence but there was more going on there if your child was unresponsive for a long long time - ask what was going on with that. I would wonder about complex partial or absence status epilecticus (which would be concerning but maybe complicated by illness/fever which is a common seizure trigger). Kids drop keppra at higher rates than adults with problematic side effects so make sure you are working with a doctor who listens and explains things well.Absence are very straightforward to diagnose from EEG. My child has atypical absence (along with other types) but I can't recognize those one bit even looking at the EEG video recording showing it occurred. We did a followup EEG to see if the meds were controlling those ok and it was a super short EEG because my child's abnormal activity was becoming constant as meds left (during the EEG these were first caught). Kids can have hundreds of common absence seizures a day where people miss all or most of them so don't assume people are the best judge of that.Common seizure triggers are poor sleep, illness, fever, stress, etc... Exercise is excellent for increasing a person's response to stress unless you find that your child responds badly to overheating in which case you need to adjust the activities or conditions. Hovering and overprotective parenting can have a worse adverse impact on children than epilepsy that is well controlled by medication (as most absence forms are).Because our child has a different form of epilepsy (both generalized and focal types), we've been on medication for, uh, 6+ years and are considering trialing weaning next summer (because the medication our child takes can take months to wean). We are lucky that the seizures have a good chance of being age limited as atypical absence are usually associated with epileptic encephalopathies.Absence is usually responsive to meds and is a relatively easy epilepsy. If you chose to not use meds, the seizures would most likely have an adverse impact on student learning. Try the meds. If they aren't great there are other med choices so make sure you are working with a doc who communicates well with you. People tend to love or hate keppra - we are in the never doing that again camp but it is a safer drug choice than most so give it a few months. And give your child B6, it seems to help people with keppra mood issues. Spacing really helps readability, try it next time.

Prognosis is very dependent on type of seizures, age of onset and other factors - while many kids with absence have similar (good) trajectories, some people don't. Keppra isn't the most common first drug for absence but there was more going on there if your child was unresponsive for a long long time - ask what was going on with that. I would wonder about complex partial or absence status epilecticus (which would be concerning but maybe complicated by illness/fever which is a common seizure trigger). Kids drop keppra at higher rates than adults with problematic side effects so make sure you are working with a doctor who listens and explains things well.Absence are very straightforward to diagnose from EEG. My child has atypical absence (along with other types) but I can't recognize those one bit even looking at the EEG video recording showing it occurred.  We did a followup EEG to see if the meds were controlling those ok and it was a super short EEG because my child's abnormal activity was becoming constant as meds left (during the EEG these were first caught). Kids can have hundreds of common absence seizures a day where people miss all or most of them so don't assume people are the best judge of that.Common seizure triggers are poor sleep, illness, fever, stress, etc... Exercise is excellent for increasing a person's response to stress unless you find that your child responds badly to overheating in which case you need to adjust the activities or conditions. Hovering and overprotective parenting can have a worse adverse impact on children than epilepsy that is well controlled by medication (as most absence forms are).Because our child has a different form of epilepsy (both generalized and focal types), we've been on medication for, uh, 6+ years and are considering trialing weaning next summer (because the medication our child takes can take months to wean). We are lucky that the seizures have a good chance of being age limited as atypical absence are usually associated with epileptic encephalopathies.Absence is usually responsive to meds and is a relatively easy epilepsy. If you chose to not use meds, the seizures would most likely have an adverse impact on student learning. Try the meds. If they aren't great there are other med choices so make sure you are working with a doc who communicates well with you. People tend to love or hate keppra - we are in the never doing that again camp but it is a safer drug choice than most so give it a few months. And give your child B6, it seems to help people with keppra mood issues. Spacing really helps readability, try it next time.

Prognosis is very dependent on type of seizures, age of onset and other factors - while many kids with absence have similar (good) trajectories, some people don't. Keppra isn't the most common first drug for absence but there was more going on there if your child was unresponsive for a long long time - ask what was going on with that. I would wonder about complex partial or absence status epilecticus (which would be concerning but maybe complicated by illness/fever which is a common seizure trigger). Kids drop keppra at higher rates than adults with problematic side effects so make sure you are working with a doctor who listens and explains things well.Absence are very straightforward to diagnose from EEG. My child has atypical absence (along with other types) but I can't recognize those one bit even looking at the EEG video recording showing it occurred. We did a followup EEG to see if the meds were controlling those ok and it was a super short EEG because my child's abnormal activity was becoming constant as meds left (during the EEG these were first caught). Kids can have hundreds of common absence seizures a day where people miss all or most of them so don't assume people are the best judge of that.Common seizure triggers are poor sleep, illness, fever, stress, etc... Exercise is excellent for increasing a person's response to stress unless you find that your child responds badly to overheating in which case you need to adjust the activities or conditions. Hovering and overprotective parenting can have a worse adverse impact on children than epilepsy that is well controlled by medication (as most absence forms are).Because our child has a different form of epilepsy (both generalized and focal types), we've been on medication for, uh, 6+ years and are considering trialing weaning next summer (because the medication our child takes can take months to wean). We are lucky that the seizures have a good chance of being age limited as atypical absence are usually associated with epileptic encephalopathies.Absence is usually responsive to meds and is a relatively easy epilepsy. If you chose to not use meds, the seizures would most likely have an adverse impact on student learning. Try the meds. If they aren't great there are other med choices so make sure you are working with a doc who communicates well with you. People tend to love or hate keppra - we are in the never doing that again camp but it is a safer drug choice than most so give it a few months. And give your child B6, it seems to help people with keppra mood issues. Spacing really helps readability, try it next time.

My first drug when I was like

Submitted by User1020 on Tue, 2018-10-30 - 04:33

My first drug when I was like 4 to 6 was tegratol chewables and it is a chance of growing out of I got older and had 9 surgeries to remove a scare or tumor due to a high fever well I was a baby and I sware I was always worried for my ma ma and daddy more then my self because they already lost one of their babies I have prayed not to dye because of that and I still have seizures but not 200 a day but a few a week and have caretaking and choir providing but you know DAD you learn to hold that kid like you could loose them and all I ever want is a dog for a best friend and my last one past and she was a white lab and the pitcher from the lord is she is sleeping on a baby and tiers drop when you see it like a service dog with it head on a baby's lap well it is napping on moms lap and you would help your baby if Kylie can't live on their own like me and it would never be forgotten.