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Nocturnal Epileptic seisures and it's sleep disruptions
Sat, 11/09/2019 - 18:03Topic: New to Epilepsy.com
My daughter of 7 years old has started experiencing siesures and having acute sleep disturbances during whole nights every day. She stops breathing for a while then starts grinding teeth heavily and that starts the episode of seisures which lasts about 1 to 2 minutes.
EEG Report: Abnormal polyspikes suggesting Generalized polyspikes
My observations:
1. Her sleep cycle consists of first normal breathing
2. then stops breathing accompanied with body posture change from one side to another
3. then starts grinding teeth heavily and
4. then episode of seisures.
if I wake her up during grinding of teeth it's very difficult and after our some talking she restarts the above cycle mostly not leading to seisures but in the early mornings she is in very deep sleep and grinds teeth heavily and have seisures almost everyday. I tend to wake and observe her everyday whole night. as soon as she starts grinding her teeth I try to wake her up so that she doesn't go in seisures. she has very very deep sleep during the mornings and it's almost impossible to wake her up. I have also noticed her internal talk during change in posture when grinding teeth.
At day time she never experienced seisures or teeth grinding. she is very sharp and witty talking to anyone. She has black rings around eyes and always pale face with dark internal linings in some parts of face.
my fears:
Being new to epilepsy I have some doubts about her future:
1. What is the risk of cognitive Impairment.
2. Can it lead to brain and heart damage due to lack of oxygen during non breathing?
3. Will it affect her academic excellence (She is topper in class one with 100% marks.)
4. How my life as parent will change due to not sleeping the whole night as I can't even think of her having episode when I am in deep sleep.
5. can she might develop seisures during day time in future.
6. What are the other consequences in behavoreal changes. Right now she is enjoying great friendships and good laughter's with friends?
ANY ADVISE TO HOW TO LOOK AFTER HER AND BEST WAY TO CARE SO THAT SHE DOESN'T DEVELOP PHYSICAL, BEHAVORiAL AND cognitive complications
Comments
Hello Amar,I am a licensed
Submitted by Patriotrehab on Sun, 2019-11-10 - 23:34
Hello Amar,I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. Someone from the Epilepsy Foundation will probably be responding to you during the week with some links to some reading material, but they will likely redirect you back to the doctor for many of your questions. Statistics show that as many as 70 percent of people affected by epilepsy are able to have their seizures under control with medication or other treatments. For the other 30 percent, no treatment currently exists. Some people who have epilepsy also experience cognitive impairments, but this usually gets better with seizure control or is a side effect of medication. Please keep in mind that cognitive impairment does not happen for everyone with epilepsy and like I said if her seizures are under control and if she is on a medication that is well tolerated than this may not be an issue for her. Even if she has some areas of difficulty, these are usually in the areas of memory and attention and processing speed rather than intelligence and with reasonable accommodations like extended time on tests, she can still be a great student. They can do what is called neuropsychological testing to screen for cognitive impairment if you start to notice problems in school. Just be sure that you ask for this includes testing of processing speed as this is often a hidden problem and if you can get it done at an epilepsy center that is preferred. Sometimes it can be emotionally hard on a child with epilepsy if other kids see her have a seizure and because she may be restricted from certain activities for safety reasons by the school or the doctor, but that’s why it’s important to get the seizures under control and to talk with the doctor about safety and to involve her in activities that she can feel confident and enjoy. As her seizures get under control you will also feel more comfortable as a parent in being able to sleep and help her to live independently as she grows up. If her seizures aren’t controlled after trying two medications, she should see an epilepsy specialist also called an epileptologist at an epilepsy center and perhaps you could ask them about any recommendations for devices to monitor her sleep to alert you so that you may also sleep. Hope that helps answer some of your questions.
Hi, Thank you for posting, we
Submitted by Anonymous on Tue, 2019-11-12 - 08:31
Hi, Thank you for posting, we understand this must be very scary for you all to experience. It’s important that you all continue follow-up with your daughter’s healthcare team to express your concerns and discuss any changes in side effects, seizure types, frequency, behaviors and symptoms, to determine what individual treatment is best for her. If you have not already, you may want to consider having her see an epileptologist (epilepsy specialist). For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist 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 here: https://www.epilepsy.com/living-epilepsy/toolbox/new-seizures-and-epilepsyA key part of managing epilepsy is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living to learn more about resources that are available & when help is needed. https://www.epilepsy.com/living-epilepsy/our-programs/individual-family-servicesvYou can learn more about seizure safety while sleeping, here: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingand review our seizure alert device factsheet with her doctor, to see if a seizure alert device is an option for her: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIt’s 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/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
also what are her chances of
Submitted by kukrejaamar on Sat, 2019-11-09 - 18:11
also what are her chances of recovering completely or to have normal sleep at least. She has started taking Sodium Valproate oral solution 4ml 3 times a day. just taken first dose today.