14 hour seizure

[jennifer]

Dear DR:
     My friend is 27 years old, no hx of major illness or trauma,
and was in her ninth month of pregnancy when she began having
shaking in her arms and hands.She was worked up by her OB with no dx, and sent to a neurologist who stated it was anxiety. the day she went into labor the shaking was all over and she was babbling and disoriented.After the epidural she was oriented and the shaking stopped.She preceded to have an uneventful delivery.
Then 4 days postpartum the shaking began again, not constantly but for a good portion of each day.At 7 days postpartum we were at a park and she c/o feeling weak as well as shaky.Just as she sat down she went into a grand mal seizure.She was rushed to a local hospital where she continued to seize.The Drs. put her on a ventilator and after 1 hour of seizing was life flighted to OSU.In the MICU she continued to seize despite multiple meds FOR 14 HOURS until finally she was put into a pentobarbital coma.Her blood work was pretty normal except for an ammonia over 500.The
1st MRI and CT Scan both were neg for stroke, tumor, bleed-both showed severe brain swelling.2nd MRI and CT pretty normal.Chest xray,2 spinal taps, multiple bld, urine and central line cultures
all negative.EEG once the 14 hour seizure stopped showed something abnormal but the neurologist said it wasn't seizure activity but unsure what it was.GYN exam unremarkable.She did develop a UTI few days after admission.She also had a fever fluctuating from 99 to 103 degrees on and off the antibiotics.
Liver function tests were normal.Drs couldn't determine a cause so they wanted to bring her out of the coma hoping she could give them answers. 2 weeks after the initial seizure she woke up
with both her long and short term memory affected.She continued to have the fever which would go higher at night but during the day would return to 99 without antibiotics.Her long term memory has come back some,she can remember people and places from her past but not details. Her short term memory is still affected she doesn't remember anything from the last year including the birth of her baby.She also is having difficulty remembering things day-to-day.She can't remember what she did the day before or even who was in her room an hour before.The fever has since broke and she was transferred to the rehab unit.Day 2 in rehab
she began shaking again in her arms and hands and c/o a cold sensation across the top of her shoulders and back of her neck.
The rehab DR decided he didn't need to call the neurologist and just ordered an ammonia level, which came back slightly elevated.
The Drs did think maybe she had a rare disorder called carbamyl-phosphate synthetase I deficiency but the test results which were sent out and took 2 weeks to get back were negative.Her husband is beside himself not knowing what is the cause of this.
Ob hasn't found anything but with coinciding with the pregnancy
should they not have anymore children?There are so many unanswered questions.It is a miracle she is alive and functioning so well but how do we know this won't happen again.
What about the ammonia level rising again? The plan is to keep her on the tegretol for 6 months to a year and then wean her off.
Have you ever heard of such a case? Her husband is planning on taking her to Cleveland Clinic for a second opinion once she is well enough to travel since the Drs at OSU have told him he may never have an answer.Any recommendation on who to see for the second opinion??Any insight or advice would be so appreciated.
Thank you.

[barbara to pain and lortab]

I am currently on 8 mg of Klonopin and 1200 mg of Neurontin a day for my seizures. They are long status like tonic-clonic. The Klonopin really has stopped then shaking well. Now when I have a prolonged seizure it is only stiffness and half consciousness. I cannot move or respond during the seizures but I still know what is going on to a point. I don't recall everything as they have become more affecting my consciouness than before but much less shaking and less pain.

The aftermath post-ictal half consciousness has become longer and more bothersome however. I do become extremely depressed and agitated and babble senselessly until I come out of it. It is also the only time I crave going back to drinking, but luckily now that I know the seizures are a trigger point for my alcoholism I don't fall for it anymore. I have been off the booze for over four months and hope never to touch it again.

[jennifer]

Thanks for such a quick response. I spoke to my friend's husband
re: your questions.He states she didn't have any proteinuria or increase in blood pressure throughout her whole pregnancy even when she began shaking.Her platelets are good but she did have a low hgb which required 2 units packed cells but that was 3 weeks post seizure.The last EEG was 2 weeks ago.They removed it because they needed it for another pt, only one on the unit.
The EEG during the coma was focal spikes but unsure what it was during the seizure.She continues to have the shaking in her arms and hands which the DRS. are saying is due to the seizure meds.
She is now on Dilantin and Keppra.Could the meds be causing it?
If so, what about the same shaking she had before the seizure and before the meds?Her most recent ammonia level was only a few points above normal.Can such a small increase cause these sx?
FYI-1 week before delivery she woke one am and couldn't feel or move her legs, her left arm was numb and she had slurred speech.
After 20 minutes it resolved and the DRS in the ER said she had a "vascular headache".She also had loss of appetite x 3 weeks before delivery with a loss of 11 lbs.Also her husband would like to bring her to Cleveland Clinic for a consultation, who should he contact? By the way the baby is doing wonderful.Our preacher and his wife and my husband and I are taking turns caring for her.Hope this additional info helps. We appreciate your input.

[CCF Neuro[P] MD, RPS]

Dear Jennifer:

I would see Dr. Nancy Foldvary.  She is an excellent epileptologist and very familar with woman's issues and epilepsy.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear Jennifer:

I am very sorry to hear about your friend.  It is difficult to tell you what is occurring.  It sounds like it might be eccamplsia (pregnancy induced HTN, proteinuria, and seizures) or HELP syndrome (hepatitis,encephalopathy and low platelets).  The increased ammonia suggests some sort of liver involvement.  I am not sure why they would put someone in coma without knowing if the patient was in status or not-did they do an EEG to confirm the need to coma, and did they monitor her during the coma (length of burst suppression, etc).  You mentioned that her EEG is still abnormal, but what is the abnormality-EEG slowing, focal spikes, focal slowing, etc?  If she is having liver problems, tegratol is likely not the best medication to use.  Something like Keppra that is not metabolized by the liver might be safer.  

Prolonged seizures often will induce memory loss, both short term, long term and retrograde memory.  Depending on the hippocampal damage, the memory should get better, but how much is likely dependent on the etiology of the seizures etc.  In addition, high levels of ammonia might be contributing to the memory problem as this can cause cognitive changes.

Sorry, there is not much to tell you without knowing more.  I do hope your friend resolves back to normal soon.  How is the baby doing and who is taking care of him/her?

Sincerely,

CCF Neuro MD