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Update with a lot of questions
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amyrmca posted:
First and foremost all of you are awesome. You've been a great support system and I am so grateful to each of you for taking the time to read and reply to my rants, fears, questions, and emotional posts. I also want to thank each of you for the congratulations on my marriage. Now to my questions and concerns. So we went to see the neurologist Tuesday. She answered some questions but also caused me to have more. They are working on changing his meds over to something else. They didn't take him off his others yet. They want to transition him to the new stuff and gradually take him off the old stuff. Next month they are going to try and do a week long inpatient sleep study and induce a seizure. What exactly will they do? Is there a possibility of him having a really bad seizure? What do I need to be prepared for? All of you have said to do a seizure journal but I have a few questions regarding that. What do I write in it? I know to write he has a seizure but do I write the length, what he does before and after, and when. Could someone please explain this to me? Also, do any of you have any idea why he might be sleep walking right after he has a seizure? While he sleep walks he pees on stuff. He does it even when he hasn't drink anything and he has gone before bed. Last but not least, I'm a little worried about something the neurologist said. She said there was a chance he could pass it on to our children. She said she wouldn't know more until after the sleep study. Is there reason for me to worry? Is it different in children than adults?
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dancer86442 responded:
Amy,

Look on the rite side of your screen. Do you see Helpful Tips> clik on See All. Journal Info is posted there! Everything you need to Note! Yes, to everything you mentioned & More.

Induce a seizure. Strobe lights are one of their methods. Sleep deprived, another. Transitioning him off his meds onto another med could cause seizures, too. But, Amy, consider this. What better place to be, than around DRS who Know what to do?

Changing meds. They will do that Slowly. He will decrease the dose of med he is on. once a week, once a mth. Depends on med/dose. While he is coming Off that med, they will start him on a Low dose of the New med. OK? Amy, he Mite have seizures while going thru the transition. You know seizure 1st Aid, so take a Deep Breath & Do It! Use Common Sense! He won't be able to Drive. He's liable to experience 'new' side effects. (Note anything Unusual in his Journal. The Main thing to watch for is a Rash. Report That Immediately to his DR! ) If he wants his privacy in the Bathroom, then ask if it would be OK to place a baby monitor in there. Insist he leave the Door Open! You wouldn't want him to possibly fall & Block the Door & not be able to open it. Hang a Shower Curtain, if need be.

Sleep walking is nothing unusual. Not to me anyway. And a sleep study will tell you more about Why or if it's something other than another type of Seizure. Depends at Nite? Good Luck w/ That!

Hereditary Epilepsy. It can be the Same or the child may have seizures of another variety. Like the child w/ Sunflower Syndrome (Photosensitive) CHANCE! It's more like a Big Maybe So, Maybe Not. Don't let your Angst Dictate your Lives, Amy. Worries of today will be gone tomorrow. So they say.

Hugs! Love ya Both Bunches. Keep in mind! Everything the 2 of you are doing is "for the Better"! DRS Seeking Answers will help find Solutions!
Love Candi
 
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amyrmca replied to dancer86442's response:
Candi, they have already started to transition him onto another medication and off the old one when he went to the neurologist. He a Has had one already but it was mild. They said that this other med would hopefully help make him less aggressive. He was on tegretol and it had made him very aggressive.

The neurologist did talk about the driving and showering and such with us. So he is a lot more willing to keep the door open. Why did you say to hang up a shower curtain?

I'm used to the sleep walking. My question is, is the sleep walking part of the seizure? Everyone asks how long the seizure lasts. The seizure is usually a minute or two but then he sleep walks right after it and that can last at least 5 minutes. Do I count the sleep walking as part of the seizure or is it separate?

Thanks for the link for the journal. It helped. I had no idea what to do so it was very helpful.

The doctor was talking about sleep deprivation as the trigger when doing the sleep study but I'm not sure if they will do another method.

Thanks Amy
 
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dancer86442 replied to amyrmca's response:
The shower curtain or an accordion door were suggested as 'privacy' & Safety assurance for people w/ Epilepsy.

I am not sure if the sleep walking would be considered a Seizure. But, if it happens after every seizure, it could well be a part of the 'aftermath symptom' of a seizure. So, Yes, note them as well! Any 'unusual behavior/feelings' B4, during & following a seizure need to be timed/described/noted. It's a Lot & a Pain, as Meetz said. But, it can & does Help you, your Hubby & his DR in the Long Run!

What med is he being changed to? I do hope it Works for him. Remeber 4-6 weeks. Time & Patience. Hugs Amy. Thank You for being such a Great 'caretaker'. I wish my Hubby was as concerned & asked Questions as you do. I think you are an Awesome Lady & deserve a Lot of Hugs! (((((XXXX)))) Feel them? I do!

Love Candi
 
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saxofone1 responded:
Hi Amy,

It 's nice to hear from you.

I have been keeping seizure journals since the 70s. My notes included the time of the seizure, how long it was, what I was doing prior, what I was doing when I became alert again(different location, change of clothes, etc), if I was confused, what I had been eating. The list goes on. Some of this info might not seem important but I did make notice of many common behaviors.

I used a pocket-size notepad or calendar to take notes. Ask your hubby's doc if he has any seizure calendars to help you with this. But a general notepad or calendar should do what we're suggesting. I still keep notes.

I have switched meds many times. The doc slowly eliminated one as he added the new one. This was done over a timeframe depending on what the current dosage of the one to be removed was against the dosage required for the new one. Each patient will be different. It is common for a seizure to occur at this time because the body is having a reaction to the absence of one while it adjusts to the other. This is another reason why notes are important.

I have had in-patient testing for my ep. The procedure included decreasing my meds, and the video-eeg. The meds were decreased in an effort to cause seizure activity that could be caught on the eeg and on camera. Visuality is a great help. No better place to have a seizue than when under medical watch!!! That's always a big help.

Yes, epilepsy can be a genetic condition. I believe there are tests for that, but I'm not sure. Is your husband the only one in the family with ep? Is it due to a head injury/fever/family illness? These are some questions to consider. You are right to be concerned. I'm the only in my family with ep.

Is there any difference between kids with ep and aduldts with ep? I feel that is an individual concern. Just like ep, each case will be different. Kids are more receptable to change whereas it becomes harder for adults because of a sudden loss of many opportunities(independent living, careers, driving, relationships, etc).

Candi, you cont to be there for all of us, thanks.

Amy, I feel that you're doing all you can to be a steady support. You've done so much and cont to seek. You have accepted all this with love and patience. An unwritten prescription that we all need. I hope I have offered you additional support and answers.

Thanks for reaching out to us with your concerns.
Best wishes,
angie
 
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amyrmca replied to dancer86442's response:
Thanks! Yes I feel the hugs. It is called lamictal. The doctor said it was known for bipolar but that it helps with epilepsy. He's been on it for about 2 weeks.

Thanks for explaining the shower curtain to me. Yes, the seizure journal can be a pain but it helps the doctors so I don't mind doing it.

I usually make a note of the sleepwalking. I keep track of them both.

Thanks for your help.
 
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amyrmca replied to saxofone1's response:
Angie, his uncle, his mom's brother, has epilepsy. They said his uncle was diagnosed when he was very little.

My husband was born 5 weeks premature but other wise was fine.

The doctor told us something about focus frontal lobe. I'm not sure what that means but that's what she mentioned. She said she'd know more when more tests were done.

Thanks for the help.
 
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dancer86442 replied to amyrmca's response:
Amy, all that means is that his seizures are originating from the Frontal Lobe of his brain. See Related News on the Rite. Epilepsy 101. Scroll thru & read Info.

Love Candi


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