Low Frequency photosensitivity

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Hi there, I was wondering if anyone can help me at all. My daughter (7) was diagnosed with Jeavons Syndrome 4 weeks ago however when we recieved the neuro letter it stated that due to low frequency photosensitivity she would also need to have genetic testing and a test to rule out Battens disease. I have (obviously) googled and can only find progressive diseases like Lafora and PME with this abnormality. Has anyone else ever had a low frequency photosensitivity? My daughter seizes all the time she is outdoors (not nessecarily sunlight). She has eyelid myclonia with absences. She has no developmental delay, no signs that we can see with her vision, no cognitive impairment so the idea of progressive illness is both terrifying and baffling.

Comments

Hi, I'm sure someone from the

Submitted by birdman on Sun, 2019-12-15 - 21:49

Hi, I'm sure someone from the Epilepsy Foundation will respond and be able to provide you with good information on low frequency photosensitivity and where you can get good support.. But my guess is that your daughter has had an EEG. During a baseline EEG technicians do the strobe light test where they flash a light at different rates to see if brain puts out any abnormal brainwaves. The patient doesn't need to have a seizure during this test for there to be an indication that the patient is vulnerable to seizures. I guessing that the term suggests that the EEG indicated there was abnormal activity during the strobe light test confirming your daughter has photogenic seizures. Hopefully this is good news and helps to rule out the progressive diseases.Mike

Hi,Thank you for posting, we

Submitted by Anonymous on Mon, 2019-12-16 - 09:19

Hi,Thank you for posting, we understand this can be very scary and upsetting for you all to experience. We are happy to hear that you all are continuing to follow-up closely with her neurologist to explore this further and for additional diagnostic testing. You all may also 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, recording medical history, moods, behaviors, triggers,and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.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-epilepsyTo learn more about Jeavons Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/epilepsy-eyelid-myoclonia-jeavons-syndromeAnd photosensitivity and seizures, visit: https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizuresIt’s common for those who are in caregiver 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

Hi,Thank you for posting, we understand this can be very scary and upsetting for you all to experience. We are happy to hear that you all are continuing to follow-up closely with her neurologist to explore this further and for additional diagnostic testing. You all may also 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, recording medical history, moods, behaviors, triggers,and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.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-epilepsyTo learn more about  Jeavons Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/epilepsy-eyelid-myoclonia-jeavons-syndromeAnd photosensitivity and seizures, visit: https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizuresIt’s common for those who are in caregiver 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 

Hi,Thank you for posting, we understand this can be very scary and upsetting for you all to experience. We are happy to hear that you all are continuing to follow-up closely with her neurologist to explore this further and for additional diagnostic testing. You all may also 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, recording medical history, moods, behaviors, triggers,and other personal experiences, that may affect seizures and wellness, which can be shared with her healthcare team.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-epilepsyTo learn more about Jeavons Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/epilepsy-eyelid-myoclonia-jeavons-syndromeAnd photosensitivity and seizures, visit: https://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizuresIt’s common for those who are in caregiver 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