Infant diagnosed with focal seizures potential cortical dysplasia

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Hi - new here and a little bit overwhelmed having just received an epilepsy diagnosis for my baby girl. About two weeks ago i started noticing seizure like episodes where my daughters eyes would roll back and twitch and sometimes her mouth would quiver. We just spent two nights in a pediatric epilepsy monitoring unit on a 48 hour EEG followed by an MRI. She did have a seizure while on the EEG and the Dr noticed what he called a "birthmark" on the right side of her brain where the layers potentially didn't develop correctly in Utero - another term for which is cortical dysplasia. She's been started on Oxycarbazepine as the first line of defense against the seizures and we are supposed to monitor and see where we go from here. Quite frankly i'm still processing and i'm still terrified and totally overwhelmed. I am posting this to see if anybody has had similar experiences with their children and what was their journey like/how are they doing now? - Will my daughter develop normally? - What are the odds medication will control her seizures. - Any chance she can "outgrow" these seizures thanks everyone

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Thu, 2020-02-06 - 09:48

Hi, Thank you for posting, we understand this must upsetting and scary for you all to experience. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt may helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also 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 Additionally, you may always 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, or contactus@efa.org. epilepsy.com/helpline Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community. 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-epilepsyIt’s important that you’re continuing to follow-up with your daughter’s healthcare team to express your concerns and if she experiences changes in seizure types/frequency, symptoms, side effects, moods and behaviors to determine what individual treatment plan is best for herTreatment and how the body may react to certain medications varies for each individual. To learn more about Oxycarbazepine please visit: https://www.epilepsy.com/medications/oxcarbazepine You all may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for recognizing and tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies, that may affect seizures and wellness, which can be shared with her healthcare team.

Hi, Thank you for posting, we understand this must upsetting and scary for you all to experience. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt may helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also 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  Additionally, you may always 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, or contactus@efa.org. epilepsy.com/helpline    Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community. 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-epilepsyIt’s important that you’re continuing to follow-up with your daughter’s healthcare team to express your concerns and if she experiences changes in seizure types/frequency, symptoms, side effects, moods and behaviors to determine what individual treatment plan is best for herTreatment and how the body may react to certain medications varies for each individual. To learn more about Oxycarbazepine  please visit: https://www.epilepsy.com/medications/oxcarbazepine You all may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for recognizing and tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies, that may affect seizures and wellness, which can be shared with her healthcare team. 

Hi, Thank you for posting, we understand this must upsetting and scary for you all to experience. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfIt may helpful to find someone you trust to talk about your concerns and worries. Some confide in their partner and others to close friends and family, or your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources. It may also 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 Additionally, you may always 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, or contactus@efa.org. epilepsy.com/helpline Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates , find support groups, events, and programs in your community. 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-epilepsyIt’s important that you’re continuing to follow-up with your daughter’s healthcare team to express your concerns and if she experiences changes in seizure types/frequency, symptoms, side effects, moods and behaviors to determine what individual treatment plan is best for herTreatment and how the body may react to certain medications varies for each individual. To learn more about Oxycarbazepine please visit: https://www.epilepsy.com/medications/oxcarbazepine You all may want to consider keeping a journal or a diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for recognizing and tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies, that may affect seizures and wellness, which can be shared with her healthcare team.

Infant diagnosed with focal seizures potential cortical dysplasia

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Thu, 2020-02-06 - 09:48

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