13 YEAR OLD DAUGHTER 1ST EPISODE

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Hello, My daughter has had 2 seizures over the summer. Both were grand mal & both times were in the shower. Her father has a history of seizures but, outgrew them by age 7. All if her tests came back normal. However, they did notice her heart increases upon standing & she complains of being dizzy often. Has anyone else experienced this? Please advise. Just trying to gain as much insight & information as possible. Thank you for your time.

Comments

Hi AMBERN36, Thanks so much

Submitted by Anonymous on Wed, 2019-08-14 - 20:35

Hi AMBERN36, Thanks so much for posting, we understand this can be very scary and confusing to experience. It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects,seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Additionally, you may want to consider with your daughter's healthcare team having a device that can help track seizures, by visiting: https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies,recognizing triggers and health events that may affect seizures and wellness,which you can share with her providers. To learn more about managing epilepsy, please visit: https://www.epilepsy.com/learn/managing-your-epilepsy It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, 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.pdfThe 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-tools Sometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

Hi AMBERN36, Thanks so much for posting, we understand this can be very scary and confusing to experience. It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects,seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf .          Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Additionally, you may want to consider with your daughter's healthcare team having a device that can help track seizures, by visiting:  https://www.dannydid.org/  and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies,recognizing triggers and health events that may affect seizures and wellness,which you can share with her providers. To learn more about managing epilepsy, please visit: https://www.epilepsy.com/learn/managing-your-epilepsy It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, 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.pdfThe 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-tools  Sometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline  

Hi AMBERN36, Thanks so much for posting, we understand this can be very scary and confusing to experience. It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects,seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . Our new to Epilepsy & Seizure tool kit is a great resource and starting point for learning about epilepsy, what resources are available, how to make the most of doctors' visits, and how to take control of seizures & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsy Additionally, you may want to consider with your daughter's healthcare team having a device that can help track seizures, by visiting: https://www.dannydid.org/ and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies,recognizing triggers and health events that may affect seizures and wellness,which you can share with her providers. To learn more about managing epilepsy, please visit: https://www.epilepsy.com/learn/managing-your-epilepsy It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, 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.pdfThe 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-tools Sometimes it's helpful to connect with other people who live with or care for those with epilepsy, to ask questions,share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community. Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

[url=https://gph.is/2bZufS7

Submitted by PoisonJay on Tue, 2019-09-03 - 02:15

[url=https://gph.is/2bZufS7]Hi![/url] I'll keep my finger crossed for your daughter. Hope she's feeling better!

Hello, at 20 months old, my

Submitted by Yislem24 on Thu, 2019-10-31 - 00:51

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick. After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!! When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating  but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal  episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick.  After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!!  When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !

Hello, at 20 months old, my daughter shortly after waking up I was preparing her breakfast started to turn pale her lips were white and she became very weak I called 911 and they arrived after 7 mins by the time they got to see her she was back to normal. Her colors were coming back. I still took her in to emergency and every test came back negative blood work. But she had a urine infection so they assume it was from that. Six months after (Thanksgiving 2017) it happens again morning, before breakfast and pale and she looks like she’s passing out her eyes are trying to close and she was Sweating but her hands were cold. Again, the hospital said another urine infection but this time, i wanted her a neurologist and cardiologist and we did after and eeg sleep and Awake was normal and cardiologist testing as well. Nothing happen again until now June of 2019 after nothing for 2 years. This time she was older, we were shopping at a furniture store and she whined and when I looked at her I saw the pale face and the weak symptoms i grabbed her and people there helped me by calling 911. She was responsive the whole time just acting like she was gonna pass out while pale and sweating cold. I told my husband this is something else happening. I wanna throw in there that I at the age of 7 till around 10 I would pass out of the blue (vagal episodes) it wouldn't happen often. So back to my story . I took her to children’s hospital and I explained everything to them and they mentioned to admitted her and do an eeg video for 24hrs. Next day they came back and told her on the eeg the saw some epilepticform discharge and they wanted to do an MRI shortly after that the came and said they thought she also had cortical displasia and that was maybe causing seizures. I was confused and sad terrified but always trusting god and them as doctors. We got send home and They put her on medicine Keppra which I hated the fact that my 3 yr old was now diagnosed with epilepsy and taking medication twice a day and I knew in my heart she wasn’t epileptic nor sick. After a week I thought I need a second opinion, I google the best neurologist in Florida and lead me to Boston children’s hospital. While we were waiting for her appt at Boston on Sept 2 she told me one morning my stomach hurts and right after she got stiff and her eyes turned to one side only. That was the first seizure she had!! When we got to the hospital I explained everything and they suggested That the medicine dosage wasn’t enough. I stated that I had my daughter had never had a seizure before, that this time it was a seizure and to me It was cause by Keppra the medicine I was giving her. They wanted to give her there a loading dosages which I refused. I told them that medicine had made her have a seizure I was sure of that. After that sept 17 we flew to Boston, There I took her and they did a eeg with lights and awake and asleep and hyperventilation. I spoke to doctor and she told me she saw spikes on her eeg while she was dosing off to sleep. That she was also thinking it was epilepsy but not 100% sure because the explanation of the episodes, i told her I didn’t want to give her any more medicine, that I knew it was that, that I had vagal episodes as a kid and that is what she is having. And she agreed to start weeing her off meds. And it’s been two months with out any medicine and she is back to her normal self. She doesn’t have any epilepsy she didn’t need any medication. I never write on boards and I actually created this account on here to tell parents and anyone that always follow your gut instincts, your mother or father instincts, never settle for one diagnose never never listen completely to there diagnosis. Sadly doctors quickly prescribe medication to children that are drugs and his so harmful to them . I hope this helps someone out there that’s going through something similar. God bless you all And always trust out father god !