Balance issues

Hi, Thank you for posting. 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.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 Keppra and seizure medication side effects, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects 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, how to take control of seizures, seizure first aid & safety, & find self-management tools. Learn more, by visiting:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyAdditionally, you 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 her seizures, setting reminders, recording medical history, medications, side effects, moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. It’s 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/living-epilepsy/parents-and-caregivers  It can 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  Or 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, contactus@efa.org. epilepsy.com/helpline   

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 !