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So I have a 4 year daughter and for past 6 months we noticed she was having a staring moments where she couldn’t be snapped out of even though they only lasted few moments they became more frequent so with there being epilepsy in the family we spoke to our paediatrician who booked her in for a EEG which we had a few days ago. Well whilst doing the hyperventilating test, my daughter started to have what was an assumed seizure on the bed. Her body stiffened with her legs crunched up. Arms straight and fence her head was slightly shaking, her teeth was gritted and she was growning. She had changed slightly blue colour. The technician was great who noticed she was having some sort of seizure and when repeating that part of the test a second time she done it again. Now being new to this and not expecting her to do that on the bed as all we have ever seen her do are staring moments I’m obviously in shock. So kind of looking for some reassurance and guidance with what happens next. How to prepare myself. Prepare my daughter. How long do I wait. Anything would be great. Muma here is lost!

Comments

You are doing everything

Submitted by Patriotrehab on Sun, 2019-09-29 - 19:55

You are doing everything right, right now. As to how long it will take to get the results, there’s no way to know because each doctor and facility is different. If you haven’t heard something within a week, you can be an advocate for your daughter by calling to see if the results are available. I certainly understand your concerns, but you have already taken precautions and there are some very effective medications and other treatment options available if she is diagnosed with epilepsy. You can best help your daughter by demonstrating that you are going to protect her by doing what you have so far...staying calm, getting her to the doctor, and following their recommendations as as long as you feel comfortable with the direction that they are going with treatment if that is necessary. I’ve lived with epilepsy for 19 years and while at times it is hard, it’s not the end of the world. I certainly wish you, your daughter and your family all the best!

Hi Chrissie3309, Thanks so

Submitted by Anonymous on Mon, 2019-09-30 - 09:20

Hi Chrissie3309, Thanks so much for posting, we understand this can be very scary and upsetting to experience. It’s important that you continue to follow-up with your healthcare team to describe these episodes she’s been experiencing, further and to get the results of her EEG. Treatment varies for each individual, so it’s also it's important that you discuss any changes in seizure types, frequency, symptoms, behaviors, sides effects & moods to help determine what individual treatment plan is best for her.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, seizure first aid & safety, & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsySeizures can take on many different forms and affect different people in different ways. For more information about seizures, EEG readings & diagnosing epilepsy, please visit: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg https://www.epilepsy.com/learn/diagnosis/diagnosis-101-basics You all 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 seizures, recording medical history, medications, side effects,moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medication, when to refill a prescription, medical appointments and tests. Gianna offered some great advice & support in her comment! It’s important to remember that you are not alone. It's common for those who are in caretaker role to feel overwhelmed 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.pdfAdditionally, you may always 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 Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Hi Chrissie3309, Thanks so much for posting, we understand this can be very scary and upsetting to experience. It’s important that you continue to follow-up with your healthcare team to describe these episodes she’s been experiencing, further and to get the results of her EEG. Treatment varies for each individual, so it’s also it's important that you discuss any changes in seizure types, frequency, symptoms, behaviors, sides effects & moods to help determine what individual treatment plan is best for her.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, seizure first aid & safety, & find self-management tools. Learn more, by visiting:  https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsySeizures can take on many different forms and affect different people in different ways. For more information about seizures, EEG readings & diagnosing epilepsy, please visit: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg   https://www.epilepsy.com/learn/diagnosis/diagnosis-101-basics You all 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 seizures, recording medical history, medications, side effects,moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medication, when to refill a prescription, medical appointments and tests. Gianna offered some great advice & support in her comment! It’s important to remember that you are not alone.  It's common for those who are in caretaker role to feel overwhelmed 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.pdfAdditionally, you may always 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  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community. 

Hi Chrissie3309, Thanks so much for posting, we understand this can be very scary and upsetting to experience. It’s important that you continue to follow-up with your healthcare team to describe these episodes she’s been experiencing, further and to get the results of her EEG. Treatment varies for each individual, so it’s also it's important that you discuss any changes in seizure types, frequency, symptoms, behaviors, sides effects & moods to help determine what individual treatment plan is best for her.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, seizure first aid & safety, & find self-management tools. Learn more, by visiting: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsySeizures can take on many different forms and affect different people in different ways. For more information about seizures, EEG readings & diagnosing epilepsy, please visit: https://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizure https://www.epilepsy.com/learn/diagnosis/eeg/video-eeg https://www.epilepsy.com/learn/diagnosis/diagnosis-101-basics You all 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 seizures, recording medical history, medications, side effects,moods, behaviors, triggers, and other personal experiences, which can be shared with her healthcare team. My Seizure Diary also helps you remember what to do - you can have reminders of when to take medication, when to refill a prescription, medical appointments and tests. Gianna offered some great advice & support in her comment! It’s important to remember that you are not alone. It's common for those who are in caretaker role to feel overwhelmed 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.pdfAdditionally, you may always 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 Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.