help with dosages

[mooselips]

Hi all,
As some of you know, my husband had a seizure April 6th, we went to ER, his level was 3.3, he had 1000mg. Dilantin bolused in the ER, and took 400mg. the next day, and back to his original 300mg. until today, when he had a repeat level done, which came out to be 5.2

Called Neurologist, very bad experience, she would not return call, believe me it has been has been a trying day, full of frustration.

So, I called family Dr. he ordered a repeat level coming on Friday, and pushed his Dilantin up to 400mg. a day. He weighs 190#

He has been having some "seizure" activity in his legs at night, kicking spastically...I worried it will go into a full Grand Mal.

I further have made appt. for Dr. at Cleveland Clinic for May 7th, when we get back home.

Opinions? help?

[Bernard]

Stacy is currently taking 400mg Dilantin daily and she weighs significantly less than 190#. She had trouble staying in the therapeutic range (>10) at 300mg/day.

[mooselips]

Thanks Bernard,
I would imagine with everyones metabolism at different rates, it's hard to get people adjusted....
I don't want another seizure to occur just to let us know he's too low.

IMO, and mind you, I'm not a Dr. but I would have thought he would have told him to take 300mg. extra yesterday, then bump it up to 400mg. a day. But what do I know. Seems to me, it's going to take quite awhile for the 400mg. to bring his level up. ya think?


This is somewhat putting a damper on my husbands retirement. It's hard to travel unless you have your epilepsy under control...dow that truly happen? We're so new to this, we're unsure.
My husband just needs some encouragement that things will indeed get better.

Thanks,

[skillefer]

Actually, some people do manage to get their seizures under control. Mine were controlled for 9 years. Then, stuff happened, and right now, well they're mostly under control.....But yes, it is possible to get the seizures under control using meds for some people.

[Bernard]

IIRC, roughly 40% of people with epilepsy are well controlled with anti-epileptic drugs and tolerable side effects.

Dilantin is a pretty effective drug once the blood levels are in the therapeutic range. Can your doctor check his blood levels once a week (or so) and adjust the dosage until he hits the sweet spot?

[mooselips]

Thanks all,
I will just be glad when we see the Cleveland Clinic Neurologist.

He started taking 400mg. on Tuesday, he gets a level on Friday, seems kind of soon to me, but I'd be happy to get a level everyday.

By the way, why doesn't anyone invent that? Like an accucheck machine for your blood sugar?

I'm still not sleeping well at night scared he'll seize again, and I so do not want that to happen.

[RobinN]

Yes it seems like they could come up with a ph strip that would give an accurate level.

Any scientists in the group that can help us market this? I'll design the packaging, then we can put an addition on Bernard's house.

[mooselips]

I'll just take royalties for the idea.


Seriously, sounds feasible to me....

[BuckeyeFan]

I know it is very hard to do, but try to be patient finding the right dose. I am on 550 mg of phenytek (same as dilantin) plus 2000 mg of keppra. I am about 210 right now, but I was close to that years ago when 300 mg per day worked for me. I had to keep increasing it and now I am tonic-clonic (grand mal) free for 4+ years. All sorts of factors come into play.

The thing to think about is not how many mg per day, but is that blood level in the effective 10-20 range. For me that range is probably 12-20. At get a lot of auras at the lower end. Confused and foggy at the high end.

Your still in my prayers. The weather is beautiful this week. Flowers are blooming and trees are starting to bud out.

It will get better!

[mooselips]

I think I am being patient...at least I'm trying...

It's just hard to hold him down..
He wants to be out and about.

This a.m. he is out at the garage working on shining up his car, cleaning it up, and doing guy stuff...not driving, or anything like that, mind you...but now, since the last seizure I'm kind of in the mindset where I worry if he's out of my sight. But it'll be okay, I'm sure as time goes by.

Last night NO kicking during his sleep. So we both had a good nights sleep.

They told us that kicking at night was seizure activity, so I'm glad that is gone, I always think it may evolve into a grand mal...

Hopefully his level will be a bit higher tomorrow...

As for levels, I take synthroid, and I always feel better when my level is at the high end of therapeutic.

Thanks,

[skillefer]

LOL....great minds think alike.... My hubby was just thinking the other day that he was surprised that there wasn't a monitor that could check medication levels, check for antihistamine use, as well as blood sugar. It would make life easier for paramedics if they had a machine that could check those things.

[RobinN]

Ok Bernard... we need a workshop. Start building.

[Bernard]

[RobinN]

That is perfect. You are Da Man!

Okay folks, a well stocked work room. Lets get busy figureing out an off the shelf product that measures med levels. Preferrably using first morning urine. Or does this HAVE to be blood? Guess we could have a prick test.

[mooselips]

I'm sure it would have to be a blood level.

Okay, I have this guy working on it: