Need some help - long read

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Another update.

Well, I can say that she's slighty better.

She took Keppra and atavan (spelling, I forget, but its the muscle relaxer) last night an went to bed around 8pm. She awoke at 3AM, took another atavan and slept another 4 hours.

This s probably the most she slept ever since the seizure.

I guess the neuro was on track a bit. I've not yet seen a single sign of her going nuts or speaking nonsense or any of the weird behvaiors she's had since past 4 days. She's been off dilantin for 40 hours or so I believe so perhaps the lower levels in her blood is making her recover.

She still has fatigue and other things going on. She has trouble speaking (her mind was 100% conscious though) and is a bit disoriented when trying to use her hands or walk.

The problem I have is trying to get her to eat. We tried feeding her this morning and she vomited during her meal. I'd like for her to have a meal to keep her nutrition up, but it's been a challenge. The fatigue makes her dizzy and she throws up if she eats. All my nursing friends agree that its likely her sensitive reaction to dilantin is what's causing all this.

Her dilantin levels were 4.7 in the ER yesterday so I'm hoping the remaining stuff will just be urinated out for the next 48 hours. I'm not sure if 0 dilantin levels will mean she'll be 100% normal immediately though... I'm gonna guess its gonna take some time.

We'll keep monitoring her and see what happens. Its amazing what 8 hours of sleep did for her and taking her off dilantin.

Also, thank you all for your supportive thoughts and information. Sure I got in trouble for missing work, and I had probably the worst day of my life ysterday but I'd like nothing more than to have my wife back to normal. Your support has helped tromenduously.

Ill keep you all posted.
 
Hi kindred --

Thanks for the report, I'm very glad she's improving. It's tough that she's not able to keep food down, but if you can encourage her to drink water and/or juice that might be helpful. Dehydration can exacerbate any confusion she may be experiencing.
 
Hi all another update.

Last night, my wife did not sleep at all. Even atavin did not help her to be force sleep.

She reverted to having weird personalities and speaking nonsense again in the middle of the night and no matter what we did, she was the same as she was while on dilantin.

I called her neuro this morning and he said while he doesn't think it's an infection, he sent us to the ER so we can get a lumbar puncture done.

Unfortunately, while waiting in the ER, she had another seizure. She's been on Keppra for two days now, and this is her first one since then.

I'm currently waiting in the hospital reception room while the lumbar puncture is being done. I'm trying my very best to stay strong and positive but after last night, I feel like breaking down. It seems no matter what we do, there are no answers and she keeps getting worse. Seizures are one thing, managing the frightening and stressful 'disorder' behaviors she exhibits is another.
 
Gosh kindred, I'm so sorry. I hope the LP turns something up, if only so that you can figure out what to do next.
 
BTW, is your wife still on the Levaquin she was given the first time on the ER for her UTI? You're not supposed to give that to people having seizures. She should NOT be on it! It can cause
central nervous system problems including nervousness, agitation, insomnia, anxiety, nightmares, or paranoia.
Click to expand...

if she stopped taking it a few days ago it should be out of her system now, but it may have been responsible for making her initial symptoms worse.
 
Thanks Nakamova.

She hasn't had levaquin in about 2+ days, so she should be okay in that dept.

Her spinal fluid was clear after LP which is normal, but if it turns out it wasn't an infection, then we're back at square one.

It'll be brutal waiting for the results to come back.
 
Kindred,

I am so glad your wife is better. I think you can hear a collective sigh of relief all over the forum.

The half life of Dilantin is about 22 hours, with a range of 7 to 42 hours. So it could take some time before the dilantin is significantly out of her system. I know patience is hard, but there really isn't a way to rush it, other than drinking enough water to stay hydrated and help her kidneys along with their end of the job.

In the meantime, I've found bananna, graham crackers, and applesauce aren't bad on the way back up. If she has to eat, maybe something off that list might make it easier, even if she is sick. oh, my... poor baby. I hope she feels better soon.
 
The doctors aren't too dismissive about the LP results. Most of the parameters came back normal except that her WBC (whitebloodcell) count was not something they were expecting for a normal person.

It's not a smoking gun, but they did decide to admit her in the hospital for this week and see if it really is meningitis that's doing all this.

The ID doctor spoke to us today and he said he's not 100% sure yet if it is meningitis so they sent the spinal fluid for more testing to see if it's a viral meningitis. That takes about 3 more days. It would make sense if it really is meningitis since her symptoms have not changed since the medication change.

We'll see how things play out. Her condition hasn't really improved so far and the treatment for now is some antiviral IV fluids until the simplex virus tests come back.
 
Thanks for the update Kindred. I'm glad she's in the hospital where they can see what's going on. Hope she and you can relax and get some sleep. Hang in there.
 
:e:

Hi Kindred,

Very, very, very sorry to hear what you, your wife and her aunt and mom have all gone through due to her wife's epilepsy, seizures and the her reaction to the dilantin! Good that you went to the emergency room - too bad they weren't any more helpful then they were. Sounds like they really failed you and your wife. Hoping that the keppra works much better for you wife and that it suits her. If not, hoping you find an AED that does very soon. Hoping for every one sake's that you wife becomes her normal self very soon. Also hoping your wife is able to finish her last year of her nursing degree and that she does well in it.

Your wife is extremely lucky to have such a loving, caring, considerate, concerned and very supportive husband whom will is willing to anything he can to help his wife. So wonderful to read and hear. Hoping both of you get all the support you need. Hoping to hear much better news very soon from you regarding your wife!!! Wishing you, your wife and every one else concerned the very best of luck on that account.

Miss Choccy

Susan

:e:
 
Keeping my fingers crossed that they figure it out. There's nothing worse than not knowing.
 
Hi all. Thanks again for the kind words.

My wife is still hopistalized but I'm 100x better mentally and emotionally since we're going somewhere.

My wife is nowhere near a 180 degree recovery but they have already begun treatment for antiviral and antibacterials. It looks like they're thinking it's encephalitis and still waiting on spinal fluid culture results.

She seems to have precursory epilepsy now and then but no actual seizures since the last one at the waiting room. She's almost pretty much sleeping 80% of the time and restless/irritated/confused the other 20%. She's showing very slow but some signs of recovery.

Doctors mentioned this isn't something she's going to recover overnight and will take a while. Scary how a virus can do this to you (if it turns out to be such)

I'm flying back home tomorrow so I can go back to work... much as I hate to, I've done all I can here. No work means eventually I'll lose job and no health insurance. Wife's mother will be staying with her at the hospital most of the time and they have a good nursing staff here so I'm not too worried.
 
I'm glad she's stable and getting good care. I bet you are all pretty exhausted at this point, so I hope you can get some rest, and that being back at work won't be too stressful.
 
Ugh...

Saw my wife before I got to the airport. She seemed not worse but they have to feed her through her nose since she can't really function well enough to eat at the moment.

I was hoping for the lumbar puncture fluid results today but I was informed they need to do another one tomorrow since the first one wasn't enough fluid. Heres another few more days of waiting...
 
Oh, gosh. It would be so hard to see her that way and to leave her. Even harder to wait for results.

Sometimes they like to repeat tests, too, when the outcome doesn't make sense to them or is low probability. Most often they take extra fluid and keep it for later, in case they want to run more tests. Hope they do that for her this time.

I'm so glad they are taking good care of her now. It sounds like they are on the right track.
 
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