(This post will be used to support a dialogue between consulting doctors to share ideas on treatment options. The Daily Update posts will be used for updates from Jack,Nancy or any other visitors with Sue or Attending doctors. )
This blog was created by Sue's family to help support her recovery from encephalitus or possibly viral meningitis. Sue has a very wide circle of friends both in and outside the New England medical community. Hopefully by discussing the latest status and doctor's opinions on this forum we can help keep everyone informed and reach out to an extended network for some new treatment ideas to pursue.
A brief history leading up to Sue's hospitalization...
Sue had been feeling sick,exhausted, achy... for about a week since Wed 12 Nov. She went to work over the weekend doing several 7-7 shifts at a couple different hospitals. On Tuesday 18 Nov, Sue started a shift at Nashoba Hospital at 7pm. Jack spoke with Sue at 8pm and she seemed ok. Sue made her last rounds at 11pm, then went to the on-call room to rest. At about 1am, after not responding to several pages, the staff found her in bed and couldn't wake her. They then took her into the ER and witnessed her first seizure. Jack was called at around 2am.
She had another seizure and a third around 3am after Jack arrived.
While at Nashoba, a series of tests were done including a spinal tap for CSF, Catscan, Acyclovier, and a course of antibiotics. At around 7am, Sue was transferred to Beth Israel Deaconess to their Medical Intensive Care Unit for care by a team including infectiuous disease and neurological specialists.
During Tues 18 Nov, Sue regained consciousness and was able to converse very coherently even to the point of asking what types of seizures she had experienced. Over the night and throughout Wednesday and Thursday she drifted in and out of consciousness.
Late on Thurs 20 Nov, due to rising CO2 levels the decision was made to intubate Sue to assist with breathing. On Friday 21 Nov, a large meeting was held all Sue's doctors, family and her doctor friends from work. The doctors shared the latest status and informed of next steps to do another CSF spinal tap and series of viral tests would be performed this evening.
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12 comments:
It sounds like some sort of encephalitis.
All the neuro symptoms may be due to status epilepticus-- why she can't breathe well on her own and isn't waking up. Are they using other drugs besides Keppra? If not, it sounds like she needs much more aggressive anticonvulsants.
Keppra seems an unusual first choice of anticonvulsant, and if she's still having microseizures, it sounds like she needs more effective therapy, which may include general anesthesia. I've never heard of Keppra used for what sounds like status epilepticus-- first choice is usually phenytoin or fosphenytoin (its variant). The CO2 retention and resp failure may be due to the seizures.
She was intubated because she was tiring (rising CO2) - I don't know her exact ABG (arterial blood gas) but I assume it wasn't good.
She is not in status epilepticus - the doctors said they saw periods of "possible microseizures" on the EEG but I believe that has calmed down.
Not sure if the propofol can also be helpful as an anti-convulsant(?). I had that impression they were using it as such until the Keppra was therapeutic but not totally sure.
The propofol is sedating, they are keeping her quiet for now until they feel she is ready to wake up.
They (hospital) would not let me review her chart so I am still not sure of her complete drug list.
Jack/family member should post this soon.
When I saw her this AM she had a fever of 102. 2nd spinal tap was similar to 1st cell count by report.
Thanks for getting this blog going. I went home to be with the kids Friday PM and Saturday. Grandma Lucas has the home fires burning. Our family & friends network kicked immediately and the kids are doing swell.
Thanks to the Dream Team of medical professionals that have been helping me sort through this maze. We rallied an impressive team for the 'family meeting' on Friday. I am getting world class support from Sue's colleagues in the medical community. Sue is receiving this direct benefit.
I am trying to sort thru the details so I can post them here. I encourage all to post here directly so I do not have to repackage. You can post anonymously if you have any reservations. I can provide tech support to anyone who needs help getting started with blogging.
This comment from from Dr. W @15 hours ago:
I think the concensus is that she has a viral meningoencephalitis, the causative agent at this point remains unknown. I think lupus and HIV are longshots. Did they give you the cell count results of her CSF from last night yet? Did they start steroids? Did they start the tube feeds? Do you know what her albumin is (a protein level that marks her nutritional status)? As long as her albumin is low she will continue to swell in her hands and feet (normal is around 4.0).
Dr. T. and I got daily update for 11/22/08 at @14:00. We spoke to Dr. Weiss (MICU Saturday doctor).
I am not the best one to be proving these technical updates but here are my interpretations from the Saturday 11/22/08 status call:
Spinal Tap #2
- The Gram stain was about same as 1st. I guess this is good news as the virus is not enumerating.
- White blood cell count about the same (slightly less?).
- No protein
- The test was again negative for bacteria, so we are led to believe that this is a viral infection.
Other
- There was a ultrasound of the liver because enzymes are slightly higher than normal.
- Temp is @102
- Sue is moving her legs. This is an improvement since her leg tone was mushy before she went on the respirator.
-
Note: I have no idea what much of this means so there is a good chance that I am providing misinformation. I will work to corroborate this report and try to make more accurate posts in the future.
Apparently there has been much Fifth's Disease around the schools. A parvovirus B19 titre is pending I understand. She has been started on tube feeds. HIV is a long shot but it doesn't hurt to push them to send this. I heard someone say the docs were afraid of a false (+) but the tests are pretty accurate so worth pursuing.
?Acute lupus-also agree unlikely but again some more blood tests to rule this out isn't unreasonable.
A friend of mine in the medical consulting field is asking a few ID experts he knows to take a look at this so they may ask for more details.
Let us know the updates.
The other dx. being considered is Cat Scratch Disease as Sue has a few cats.
The antibiotics I know she's on are Vancomycin, Ampicillin, and Doxycycline. Anti-viral: Acyclovir.
Family to get more details.
Below is the short list of information that Dr. N has suggested that we ask for. Please let me know what other diagnostic info is needed and I will fetch it.
1. Complete list of Sue's meds
=> I will visit hospital Sunday afternoon and get the list of currents meds. I will post this info as soon as I can get online.
=> I will have a tough time with spelling and getting accurate dosage info for meds already started/stopped but I will do my best.
2. Sue's daily vital signs (heart rate, blood pressure, Tmax-highest temperature)
=> It was decided in our family meeting on Friday that I would get daily updates @14:00 - 16:00. This is a good time since they will have finished rounding by then. Lab results are also available at this time of day. I will make vital signs part of the routine and post daily.
3. All test results as they are received, positives and negatives
=> Spinal Tap #2 Gram stain preliminary results were in today. Negative? Unremarkable? About the same as the first one. So things are not getting worse
=> See previous anonymous post for additional details.
4. Ventilator settings
=> I did not ask this but I think that the settings were slightly higher than yesterday. I will confirm this Sunday and start tracking this daily.
5. Other rest results - She had an abdominal ultrasound today looking at the liver, what did it show? , EEG, etc.
=> The lab is closed on Saturday/Sunday so no new results from the battery of tests that have been ordered.
=> I think he said the liver was unremarkable. I will confirm Sunday.
=> EEG - We discussed briefly. There do not seem to be seizures since Sue is on anti-seizure meds. There is some slight intermittent activity. I will clarify make this part of my daily update. Please let me know what to ask.
=> It is a bit frustrating because I do not know all the tests that were ordered. We have ruled out some evil things but I do not know how to spell them. We got this info in the Friday family meeting. I need to speak to Dr. R, Dr. W, or Dr T and review what we learned in family meeting. Most of the technical stuff went over my head. I do know that they have stopped at least one dropped at least one antibiotic since some tests have returned negative. More details to follow as soon as I clarify.
PS - Please let me know who is available to conference in on my daily update. It is in Sue's best interests to have a skilled medical person as part of this conversation. I am the single point of contact but I can conference call other folks into this daily call so that we maximize knowledge transfer.
The BIDMC docs do not yet have any specific ideas and treating this with a wide spectrum of antibiotics. Cat Scratch Fever and Fifths Disease are long shots and were suggested by 'us'. We have also pushed to have EEE and West Nile virus included in the testing of the second spinal tap.
I saw Sue this morning. Both eyes were open and blinking but she seemed to have no awareness that I was there. She was being sedated and the nurse told me not to stimulate her because she'd been pulling at things when stimulated. She was laying on a cooling blanket, and her temp was being monitored (rectal probe, presumably-- she was sort of on her side)-- was 101.4.
I live about 1- 1.5 miles from the hospital. I have offered to let the Boyles use my house as a homebase while in town. There is room for all 5 of you to sleep (including Sue's mom).
From cg 11/28/08:
Much of what the docs are discussing seems quite appropriate. Only other thoughts, and do keep in mind that an anesthesiologist's perspective on this is somewhat limited, might be:
Has there been any discussion about a brain biopsy (it may be early for this?) looking for pathological stigmata of a particular infection and might provide tissue for culture?
Given that the current working diagnosis is meningoencephalitis of unknown etiology, would there be any benefit to consulting with the Centers for Disease Control who might have either an epidemiological overview or some thoughts?
Given that they're leaning towards a viral etiology, is there any role for additional anti-viral therapy?
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