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.
Question
Tue, 03/13/2018 - 19:31Topic: Parents & Caregivers
So my daughters neuro put her on melatonin I think last month at 5mgs. It worked for a couple of days and then it hasn’t really worked. They put her on it for her to get a restful sleep, but her sleep hasn’t gotten any better really. She has a Fitbit and I put it as sensitive to see what I can get more of and it really tells me her sleep. I need to get ahold of her neurologist office and see what they say and go from there also. She don’t see them till April 27th I think it is and I’m thinking of seeing also if they are going to lower her onfi again, but not sure if they will. She also is on her iron 4xs a day and is still pretty pale looking so I’m not sure on that.
Should I push for it or no? She hasn’t had any seizures since like 2011-2012 but small things here and there and she still has a very messy eeg. I’m so unsure but I’m thinking they will do what they want. Her eegs have always been active. Her diagnosis is complex partial epilepsy into generalized seizures and continuous spike wave during slow wave sleep. The only med that she is on is the onfi he does not want her on any meds just one as of right now.
Nicole
Comments
thanks for the well wishes,
Submitted by Amy Jo on Mon, 2018-03-19 - 00:55
thanks for the well wishes, Joe! I hope everyone here can manage their energies wisely but I know there are times each of us underestimates what’s needed, push through anyway and get stretched thin or a bit worse. my body certainly complains better than ever when I use muscles that I didn’t know I had. just reminders to recharge and take care. may we all heed those little reminders to avoid bigger disruptions where possible. I hope you always take good care.
Thanks Amy Jo,I appreciate
Submitted by nicki604 on Thu, 2018-03-29 - 23:11
Thanks Amy Jo,I appreciate all you has said....I also hear your frustration. I am going to be kind of going through something more with my daughter...they just have to keep us on our toes right. This morning my niece noticed that she was having a hard time getting her words out so I don’t know if it was her processing it slowly and saying it or if it’s related to her seizures....hang in there and keep up your awesome work your doing...my daughters neurologist increased her melatonin to 7.5mgs to see if that will help witch it hasn’t much...the nurse also said something about maybe her needing a sleep study witch I’m sure her sleep doctor might have her do...I thought maybe he would suggest an eeg but we shall see....I do know she has rls(restless leg syndrome) but the med that they treat it for she’s been on for her seizures witch in turn her neurologist took her off it because a diagnosis that she got from the med...she will be seeing her sleep doctor in a couple of week and will go from there. Right now we are on spring break so she don’t want to use her cpap but will be on it though. She’s a mamas girl and likes to sleep her her mom and not her bed....she sees her neurologist at the end of next month but will probably give them a call tomorrow about this morning. Hope things are going well Nicole
oh please don't get burnt out
Submitted by just_joe on Sun, 2018-03-18 - 19:18
oh please don't get burnt out.. You have a wealth of knowledge. Cats eating spiders I never knew. But I do know that if you get a dog when it is a puppy and they are with you all the time they know when you will have a seizure. I got missy before I started having seizures. When I started having them she knew something was wrong and got in my way if I was trying to cross the street. She would try and steer me away from different areas I went through that had barbed wire fences. So Missy was a great dog and did know more then people think she did. To me she was a service dog before they were making them for people with epilepsy.