Daughter with confusing seizures

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Hi, I have a 21 year old that has a variety of special needs. These include autism, anxiety, LD, tourette's syndrome, OCD, and now seizures. Prior to the seizures she had a return of her tics after 2 years that became really bad. Than, she started having the ones that she had ones that she had body movements that followed the pattern of tics. Than, they went to looking like grand mal seizures that lasted about a minute but they came in clusters. She was awake during them and aware of what was going on but could respond. We had to put a pillow under her head because they were so severe. They mostly came right after stress, but not all the time. The tics went away. Than these quit and she got focal type seizures where she spaced out and sucked her lip in and played with her clothing. She said she could hear what was going on but could respond. Than we had a combination of the spacing out one, and she would drop to the floor and drop stuff she was holding. She was aware but confused. These came in clusters and lasted about a minute. She got really tired after them. She had these in class, restaurants, and home. Now she had a new one last night where she will stop walking and space out prior to that. Now she walked out of the room and down the hall. I tried to get her to respond to me, but she said she could hear me talking but did know what I said. This spacing out episodes and stopping walking happened a couple of times. She also didn't close her eyes during them. Sometimes, she rapidly blinking eyes and others just stares. We are going to St Paul in November. But, wanted to know if anyone has come across this. Thanks Diana 3+333333333333333333333333.666666666666 Has anyone encountered this before so many types and some overlapping each other.

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Hi Diana, Thanks so much for

Submitted by Anonymous on Thu, 2019-10-03 - 09:18

Hi Diana, Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. It’ important that you all continue to follow-up with your daughter’s healthcare team to describe these episodes she’s been experiencing. Additionally, it’s important that you discuss any changes in her seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for her. For assistance and information regarding finding a specialist near you, or a second opinion please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 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/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medications, when to refill a prescription, medical appointments and tests.It’s important to remember that you are not alone. It’s common for those who are in caretaker role to feel overwhelmed and it is just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfAdditionally, 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 referrals and 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 Diana, Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. It’ important that you all continue to follow-up with your daughter’s healthcare team to describe these episodes she’s been experiencing. Additionally, it’s important that you discuss any changes in her seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for her. For assistance and information regarding finding a specialist near you, or a second opinion please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 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/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medications, when to refill a prescription, medical appointments and tests.It’s important to remember that you are not alone.  It’s common for those who are in caretaker role to feel overwhelmed and it is just as important to make sure you’re taking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfAdditionally, 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 referrals and 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 Diana, Thanks so much for posting, we understand this can be very scary and confusing for you all to experience. It’ important that you all continue to follow-up with your daughter’s healthcare team to describe these episodes she’s been experiencing. Additionally, it’s important that you discuss any changes in her seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for her. For assistance and information regarding finding a specialist near you, or a second opinion please visit: https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinionshttps://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 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/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for tracking seizures, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medications, when to refill a prescription, medical appointments and tests.It’s important to remember that you are not alone. It’s common for those who are in caretaker role to feel overwhelmed and it is just as important to make sure you’re taking care of yourself as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfAdditionally, 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 referrals and 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.