Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

BRE focal sezuires

Tue, 01/21/2020 - 22:06
My daughter has a seizure a year ago and we did EEG and MRI everything looked good. It happened right as we went to bed. It was very scary. It took me awhile to let her sleep on her own. Here we are a year and 4 months later she started have a focal sezuires where it was just one side of her mouth with drooling and speech problems right after but aware. We had 3 of those back to back and went back to neurologist he put her on tripleta a half a pill a day. We moved that weekend and i hadnt started her on the medicine yet was going to the next morning. Unfortunately we woke up to her having a tonic clonic. Her mouth was blue and drool coming out I panicked and did very thing wrong my mom picked her up it was so scary we didn’t know what to do. It lasted maybe 3 mins and by that time the EMS was here. We upped the medicine to 2 300 mg a day. She was still have some tingling at night. We upped it again to 6ml twice a day. However I notice she twitches her body just a little when she goes to sleep. Is this ok??? And other moms with kids with bre how do you sleep? I make her sleep with me and I freak out every time she moves thinking she’s going to have a sezuire... help !

Comments

Hi, Thank you for posting, it

Submitted by Anonymous on Wed, 2020-01-22 - 08:57
Hi, Thank you for posting, it sounds like you all have been through a lot. Treatment and how the body may react to certain medications varies for each individual. It’s important that you’re following- up with your daughter's healthcare team discuss your concerns and if she experiences any changes side effects, symptoms, seizure types, frequency and behaviors, determine what individual treatment plan is best for her. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. To learn more about medications she takes and things to look for, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectsYou all may want to consider keeping a journal or diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, setting reminders, recording medical history, moods, behaviors, triggers,and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team. There are many different devices that can help detect seizures and notify someone to help respond.  Review our seizure alert device factsheet, wither healthcare team to see if an alert device is an option for her: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It’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’retaking care of yourself and making your health and overall well-being a priority: https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf Every parent is different in how they cope with their child's epilepsy. It is important to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. 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  The "Toll of Caregiving in Parents of Children with Medical Issues", is a 3 part webinar series focused on way to equip parents with tools to help them navigate stressors when caring for a child with a chronic health condition, here: http://ring14usa.com/index.php/2019/04/29/toll-of-caregiving-webinars/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 [email protected]. epilepsy.com/helpline  Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community. 

Thank you so much for your

Submitted by jesspeeples118 on Wed, 2020-01-22 - 20:16
Thank you so much for your response. 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.