11 yr old daughter stops breathing with seizures

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My daughter stops breathing during a seizure. She's 11 and very recently got diagnosed. She's also asthmatic so we mistook her first couple seizures for really strong asthma attacks because of the way it affects her breathing and because she does not experience convulsions. The neurology team that saw her said that as long as her heart is still beating during these episodes, she's still getting enough oxygen to keep from getting brain damage from lack of oxygen. She had a seizure shortly after her diagnosis and it happened when she got up to use the bathroom. We were all asleep so that was the first time she went through it alone. Up until this episode, I was giving her CPR thinking it was her asthma. I was convinced that it was the CPR that saved her. She just tenses up, stops breathing, passes out and turns blue. When she finally does start to breath a little, her eyes dart side to side almost like in rem sleep. The doctors are confused with her situation and said they've never treated a patient with seizures that present the way hers do. We are back in the hospital with her now due to another one of these episodes. We've been here for 5 days now and seem to be running out of tests to run. I'm terrified that we will again go home with no more information than we had when we came in. And it wouldn't be for lack of trying from the doctor's. Please, if anyone has dealt with, seen or experienced seizures like this, please share anything you've learned about them. Even if it seems like whatever information you have might not be helpful. Even the smallest detail could end up helping my daughter and I will be forever grateful. There is a strong possibility that she is dealing with more than seizures and asthma. So if you know of a combination of things that could look like what I've described (body tenses up without convulsions, breathing stops, loss of consciousness) please let me know so I can ask for the proper testing. Unfortunately there's not much more information I can give since this is still very new to us. Thank you for taking the time to read this.

Comments

Hi, Thank you for posting, we

Submitted by Anonymous on Fri, 2020-02-07 - 09:21

Hi, Thank you for posting, we understand this must be very scary and upsetting for you all to experience. We are sorry to hear that she’s back in the hospital.If you all feel like you aren’t getting the proper care or not receiving the answers you need to help your daughter you all my want to consider seeking out a second opinion at a comprehensive epilepsy center and have her see an epilepsy specialist, (epileptologist). An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, the specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families. To learn more and find an epilepsy center and epileptologist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOur 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-epilepsyAdditionally, 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. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you aren't 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 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, or contactus@efa.org. epilepsy.com/helpline

Hi, Thank you for posting, we understand this must be very scary and upsetting for you all to experience. We are sorry to hear that she’s back in the hospital.If you all feel like you aren’t getting the proper care or not receiving the answers you need to help your daughter you all my want to consider seeking out a second opinion at a comprehensive epilepsy center and have her see an epilepsy specialist, (epileptologist). An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, the specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families. To learn more and find an epilepsy center and epileptologist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOur 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-epilepsyAdditionally, 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. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you aren't 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 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, or contactus@efa.org. epilepsy.com/helpline    

Hi, Thank you for posting, we understand this must be very scary and upsetting for you all to experience. We are sorry to hear that she’s back in the hospital.If you all feel like you aren’t getting the proper care or not receiving the answers you need to help your daughter you all my want to consider seeking out a second opinion at a comprehensive epilepsy center and have her see an epilepsy specialist, (epileptologist). An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, the specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families. To learn more and find an epilepsy center and epileptologist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialistOur 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-epilepsyAdditionally, 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. It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you aren't 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 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, or contactus@efa.org. epilepsy.com/helpline

I noticed you recently had

Submitted by epilepsymom17 on Fri, 2020-02-14 - 08:28

I noticed you recently had replied to my post about my daughter who goes through the same thing. Unfortunately, we are still at a loss for what causes these seizures. My daughters seizures began with these and have now progressed to multiple seizure types. They are still unsure what type of epilepsy my daughter has. My daughter has been on keppra since august, and it has helped control these seizures. We have only seen 1 like this since. Now we experience more tonic clonic and tonic seizures. She never stays controlled on keppra for more than 2-3 weeks at a time after an increase in dosage. They are discussing adding in another medication to help control her seizures. Have you found any answers since being in the hospital? Praying for your little girl!

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