Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Scared mom
Thu, 10/08/2015 - 22:50My little girl Chloe turns 6 on October 30th. It's supposed to be about birthday parties this month. Instead, we went to bed last Friday and was awoken by an awful noise coming from her bedroom. She was having a full blown seizure. Her body was convulsing and her eyes were stuck up to the left. I am a single mom with one son and one daughter. My son woke up when I did and saw the whole thing. Called 911 and ended up in 2 ER's and then ICU. Left the ICU with a diagnosis of generalized idiopathic epilepsy and epileptic syndromes, not intractable, with status epilepticus. Chloe is on dilantin twice a day and so far it is working. We don't go back for testing until the end of the month. I am terrified every time she goes to sleep. CT and Spinal tap came back normal from ER. EEG in ICU showed left side activity. I am looking for answers that are not there. It seems like few people seize for as long as she did (estimating 30 minutes). I am doing nothing but researching all day long looking for something to help me as I am sure everyone on here is. I don't know how long it takes to know if the medicine is actually working or if she is just not having another seizure right now. I'm afraid to go to sleep and afraid to have her sleep. I'm aware of every minute right now and miss spending quality time with my 8 year old son becuase I am afraid to take my eyes off my daughter. Haven't stopped crying in days. Hardest thing a parent has to do is watch their child suffer....
First of all, I am so
Submitted by kristicain12@gmail.com on Mon, 2015-10-12 - 11:16
First of all, I am so thankful there have been no breakthrough seizures since starting Dilantin! I pray that will continue. Since her seizures happen at night, overnight monitoring may help provide you some reassurance about her seizure activity, but it takes time to get those schedules and neuros will prioritize kids without control for those services, still it would be worth asking about for your own peace of mind. Finally, it is very important that you have access to rescue meds at home that can stop the seizures. A 30 minute seizure is a very serious situation and your fears are totally justified. There should be at least 1 rescue me out there you can use that will stop any prolonged seizures in their tracks. Nighttime monitoring devices at home sound like a good investment, too. Keep researching and asking questions. That is what it takes when your child has epilepsy!!