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Has anyone experienced this?

Fri, 10/04/2019 - 20:32
My 2 year old daughter was just diagnosed with epilepsy. Every time we are in the car, she has a seizure. She also has moments where she will hold her knees together and her hands will ball up into fists and will move in the same pattern non stop for a few minutes. This happens in the car and at home. During this time, she doesnt respond. Do these also sound like seizures? Has anyone had similar experiences? 

Comments

Sounds very much like focal

Submitted by birdman on Sat, 2019-10-05 - 00:05
Sounds very much like focal seizures with impaired awareness.  Mom was driving me to a doctor appointment a couple wks ago.  We were on the highway and close to the town where we needed to exit.  Next I was in a waiting room with a doctor waving me to come forward.  I didn't recognize him but was sure it was him and I was a bit confused.  I knew I had a seizure but wasn't sure when.After my doctor visit Mom and I got in the cae and I asked, "When did it happen?"  Mom looked surprised but then shared that while she was driving I was dangling an object in front ot the air vent.  She asked, "Are you having a seizure?"  She said I replied "No".  But I remember none of this or the ten minutes afterward driving to doc's office, getting out of car, and registrating at desk.  Amazing things can happen during seizures.

Hi epilepsymom17,Thanks so

Submitted by Anonymous on Mon, 2019-10-07 - 08:49

Hi epilepsymom17,Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. We cannot determine if these episodes you’ve described are seizures, or not. It’s important that you continue to follow-up with your daughter’s healthcare team to describe these episodes and any changes in seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for her. Seizures can take on many different forms and affect different people in different ways. Learn more about seizures, here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors'visits, and how to take control of seizures, seizure first aid & safety.Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy  You all may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/manage/tracking/seizure-diaries Seizure Diary, is a great tool for tracking seizures, set reminders,recording medical history,medications, side effects, moods, behaviors, triggers, which can be shared with her healthcare team. It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role.For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referral sand additional support.epilepsy.com/helpline  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. 

Hi epilepsymom17,Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. We cannot determine if these episodes you’ve described are seizures, or not. It’s important that you continue to follow-up with your daughter’s healthcare team to describe these episodes and any changes in seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for her. Seizures can take on many different forms and affect different people in different ways. Learn more about seizures, here: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about what epilepsy is, what resources are available, how to make the most of doctors'visits, and how to take control of seizures, seizure first aid & safety.Learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy  You all may want to consider keeping a journal, or diary. My Seizure Diary: https://www.epilepsy.com/manage/tracking/seizure-diaries Seizure Diary, is a great tool for tracking seizures, set reminders,recording medical history,medications, side effects, moods, behaviors, triggers, which can be shared with her healthcare team. It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and that you’retaking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt can be helpful to connect with other parents who care for those with epilepsy, to ask questions, share experiences, find & give support to each other, by visiting:  https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents  The Wellness Institute: epilepsy.com/wellness  ,provides tools and strategies to better assist your loved one and support you in your important role.For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referral sand additional support.epilepsy.com/helpline  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. 

It happened to my daughter

Submitted by crlanier on Wed, 2019-12-18 - 06:57
It happened to my daughter every single time we pulled out of the driveway.  I told her neurologist and he did EEG and adjusted meds (increased dosage of Lamictal by 50mg).  This also happened on an airplane during the same time frame.  Good luck and hope you find relief!

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