Otharah syndrome

CDC funded page

Not a CDC funded Page

My 2 month old was born with seizures and the doctors labeled her with otharah syndrome. I have read up on it and one thing that I couldnt fine is if they did a study using CDB oil to treat it. Anybody has heard of any study or if anybody has used it for this. I would love to know the results cause we are running out of options.

Comments

Hi Sophia strong, Thanks so

Submitted by Anonymous on Tue, 2019-09-10 - 10:29

Hi Sophia strong, Thanks so much for posting. We understand this can be very scary and confusing for you all to experience. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s healthcare team to determine what is best for her and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For information regarding second opinions or assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.org 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 My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording his medical history, medications, side effects, moods, triggers, which can be shared with her healthcare team. For more information regarding Otharah Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/ohtahara-syndromehttps://www.epilepsy.com/make-difference/research-and-new-therapies/engagement/rare-epilepsy-network-ren 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.pdf.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-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. Contact 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 a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

Hi Sophia strong,  Thanks so much for posting. We understand this can be very scary and confusing for you all to  experience. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s healthcare team to determine what is best for her and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf  For information regarding second opinions or assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.org 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 My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording his medical history, medications, side effects, moods, triggers, which can be shared with her healthcare team.  For more information regarding Otharah Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/ohtahara-syndromehttps://www.epilepsy.com/make-difference/research-and-new-therapies/engagement/rare-epilepsy-network-ren 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.pdf.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-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. Contact 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 a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline  

Hi Sophia strong, Thanks so much for posting. We understand this can be very scary and confusing for you all to experience. Treatment varies for each individual, so it’s important that you all continue to follow-up with your daughter’s healthcare team to determine what is best for her and express your concerns, any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf For information regarding second opinions or assistance finding an epilepsy specialist please visit : https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist www.naec-epilepsy.org 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 My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording his medical history, medications, side effects, moods, triggers, which can be shared with her healthcare team. For more information regarding Otharah Syndrome, please visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/ohtahara-syndromehttps://www.epilepsy.com/make-difference/research-and-new-therapies/engagement/rare-epilepsy-network-ren 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.pdf.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-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. Contact 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 a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline

Are you seeing a pediatric

Submitted by Amy Jo on Wed, 2019-09-11 - 01:47

Are you seeing a pediatric epileptologist at a major pediatric epilepsy center? Those are the specialists who are best equipped to deal with this - although there's not always something that can be done. Please make sure you avail yourself of all resources for your child AND for yourself.