10 year old nocturnal seizures

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Hello - my son’s neurologist is wanting to start one of the following meds for his nocturnal seizures. Keppra, Trileptal, or Vimpap. I am researching them and my biggest concern is side effects. Right now he is such an active, happy kid. He plays travel baseball, has all A’s and B’s and is a naturally caring, sweet and funny kid. I don’t want his personality, focus or energy to suffer and some of these side effects I’m reading are scary. He has had 3 nocturnal seizures in the span of 17 months - always within 10-30 min of falling asleep. He has yet to have a daytime seizure . Can anyone tell me their experiences with any of these meds so we can make a good choice?? Thank you in advance!

Comments

Hello, I’ve been on all three

Submitted by Patriotrehab on Mon, 2020-02-24 - 21:26

Hello, I’ve been on all three of the medications that you’ve listed, but before I tell you about my specific experience with them I will say that I’ve also tried a number of others too and can tell you that the side effects are a different from person to person and it’s a matter of trial and error. My advice with any seizure medication is to start slow and go slow so that you can get used to the side effects because many of the side effects do go away after the first few weeks. Unless they are severe or intolerable, the benefits often outweigh the risks. I didn’t personally experience any side effects with Vimpat, but I also never got up to the dosage that the neurologist wanted me to because they changed my doctor at the VA and then switched me to another medication. I had problems with vision changes after 900mg with Trileptal and that wasn’t tolerable for me because they were severe, but that is a rare side effect and it wasn’t until I reached a certain level. I remember being drowsy on Keppra, but I think they started me off on too high of a dose and never gave me time to adjust. So, that’s why I advise that you talk with the neurologist about titrating the dosage slowly until you reach a level that he believes is therapeutic for seizure control.

Hi,Thank you for posting and

Submitted by Anonymous on Tue, 2020-02-25 - 09:56

Hi,Thank you for posting and we understand your concerns. As Gianna mentioned in her comment, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it.For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects .You all may want to consider keeping a journal or a diary to help keep track of his seizures, medications, moods and more by using a diary or a journal. My Seizure Diary,can be shared with his healthcare team and used to organize his health issues, record medication side effects, develop seizure response plans, and more: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryIt’s important that you all are continuing to follow-up with your son’s neurologist to express your concerns and if he experiences any changes in seizure types/frequency,side effects, moods, behaviors or symptoms, to help determine what individual treatment plan is best for him. Review our seizure alert device factsheet, with his healthcare team to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding nocturnal seizures and safety while sleeping, visit:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.

Hi,Thank you for posting and we understand your concerns. As Gianna mentioned in her comment, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it.For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects  .You all may want to consider keeping a journal or a diary to help keep track of his seizures, medications, moods and more by using a diary or a journal. My Seizure Diary,can be shared with his healthcare team and used to organize his health issues, record medication side effects, develop seizure response plans, and more: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryIt’s important that you all are continuing to follow-up with your son’s neurologist to express your concerns and if he experiences any changes in seizure types/frequency,side effects, moods, behaviors or symptoms, to help determine what individual treatment plan is best for him. Review our seizure alert device factsheet, with his healthcare team to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding nocturnal seizures and safety while sleeping, visit:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community. 

Hi,Thank you for posting and we understand your concerns. As Gianna mentioned in her comment, treatment and how the body may react to certain medications varies for each individual. Seizure medicines may cause unwanted side effects in some people, however not everyone who takes seizure medication will experience unwanted side effects. Most of the time, the effects are mild and don’t last long. Often they can be treated by adjusting the dose or how a person takes it.For additional information about seizure medications and side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects .You all may want to consider keeping a journal or a diary to help keep track of his seizures, medications, moods and more by using a diary or a journal. My Seizure Diary,can be shared with his healthcare team and used to organize his health issues, record medication side effects, develop seizure response plans, and more: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryIt’s important that you all are continuing to follow-up with your son’s neurologist to express your concerns and if he experiences any changes in seizure types/frequency,side effects, moods, behaviors or symptoms, to help determine what individual treatment plan is best for him. Review our seizure alert device factsheet, with his healthcare team to see if an alert device is an option for him: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfFor additional information regarding nocturnal seizures and safety while sleeping, visit:https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingIt’s common for those who are in caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other,by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or contactus@efa.org. epilepsy.com/helpline .Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community.