Fri 21 Nov 7pm:
We will use this post for Daily Updates. The Consultant Comments post will be used for a dialogue between consulting doctors and others on potential treatment options. We will use other posts: Med List, Meeting notes to keep reference items at top level.
From Jack:
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.
Sat 22 Nov 12 noon:
Temperature hit 102 Fri night / Sat am indicating fever, she had a cooling pad on chest
There were some episodes of high heart rate Fri night / Sat am, and reacted to being turned over during cleaning
Feeding tube was connected late Fri, interrupted Sat Am in prep for Abdominal ultra-sound, possibly to asses Liver, previous report was Liver had 2x normal enzyme level
During visit, Sue was moving her legs , pulling them up and stretching them all the way out, like normal sleep restlessness but appeared to have good muscle control
Nurse reported some involuntary hand clasping of covers
Sun 23 Nov ( from Melissa B)
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).
Friday, November 21, 2008
Meeting Notes
Fri 21 Nov
A meeting was held on Fri about 3:30pm with about 20 in attendance from ICU attending, Infectious Disease, Neurology to brief Sue's family and colleagues on the current test results and next steps. Main next step is to do a 2nd spinal tap on Fri evening and continue with pending viral / bacterial tests.
ICU attending and resident staff will be rotating with replacements as early as Monday.
Steroid Treatment:
The Neurologist suggested steroid treatment as an option to reduce inflammation. At the end a question was asked about the timing for the decision to proceed. Neurologist wants to wait until comparing the initial results from the 2nd spinal tap to the first.
Attending ICU update:
History given, Spinal tap suggested a viral cause
Continue large infectious disease workup
Lumbar puncture fluid is all used, need 2nd
No tests have been positive
Ebv entra virus
No pateria in LP fliud
still pending: EEE, Cmv, West nile, Mycoplasma
Cmv viral lobe negative
MRI enhancement of the sinuses – could have been a bleed but could not be a
Abiotger KO
Neurologist update:
She was confused when entering icu
Large dose of mediations
Dilanton and sedation medicine aided to her confusion
Extensive infection still affecting both hemispheres (**NancyG.-Not sure what this means)
EEG monitored to ensure no more seizures
No clear seizures post entry into ICU
Need to monitor her for a long period of time
Periods of activiy not classic for activity
Repetive in nature
Propofol is keeping her calm on ventilator and strong anti-convulsive nature as well
On her scan abnormal
Extensive inflammatory response
Slow wave pattern in left temperal region (*Nancy – not sure what this means_
Infectious Disease: update:
High concern of infectious process going on
Bartinella virus – cat scratch fever ?
Routine bateria less likely
Listeria still an option
Leaning more toward encephalitis
CNS is primary
LCMV – what is that ?
Can’t test for hiv in Massachusetts without consent of patient (hippa rules)
Next steps from ICU:
Repeat lumbar test
Another test to establish a trend
Next steps from neurology:
1. Identify organisms
Take a broad approach
2. Keep her seizures under control
3. Review anti-steroid after review of spinal tap if looks more inflammatory
A meeting was held on Fri about 3:30pm with about 20 in attendance from ICU attending, Infectious Disease, Neurology to brief Sue's family and colleagues on the current test results and next steps. Main next step is to do a 2nd spinal tap on Fri evening and continue with pending viral / bacterial tests.
ICU attending and resident staff will be rotating with replacements as early as Monday.
Steroid Treatment:
The Neurologist suggested steroid treatment as an option to reduce inflammation. At the end a question was asked about the timing for the decision to proceed. Neurologist wants to wait until comparing the initial results from the 2nd spinal tap to the first.
Attending ICU update:
History given, Spinal tap suggested a viral cause
Continue large infectious disease workup
Lumbar puncture fluid is all used, need 2nd
No tests have been positive
Ebv entra virus
No pateria in LP fliud
still pending: EEE, Cmv, West nile, Mycoplasma
Cmv viral lobe negative
MRI enhancement of the sinuses – could have been a bleed but could not be a
Abiotger KO
Neurologist update:
She was confused when entering icu
Large dose of mediations
Dilanton and sedation medicine aided to her confusion
Extensive infection still affecting both hemispheres (**NancyG.-Not sure what this means)
EEG monitored to ensure no more seizures
No clear seizures post entry into ICU
Need to monitor her for a long period of time
Periods of activiy not classic for activity
Repetive in nature
Propofol is keeping her calm on ventilator and strong anti-convulsive nature as well
On her scan abnormal
Extensive inflammatory response
Slow wave pattern in left temperal region (*Nancy – not sure what this means_
Infectious Disease: update:
High concern of infectious process going on
Bartinella virus – cat scratch fever ?
Routine bateria less likely
Listeria still an option
Leaning more toward encephalitis
CNS is primary
LCMV – what is that ?
Can’t test for hiv in Massachusetts without consent of patient (hippa rules)
Next steps from ICU:
Repeat lumbar test
Another test to establish a trend
Next steps from neurology:
1. Identify organisms
Take a broad approach
2. Keep her seizures under control
3. Review anti-steroid after review of spinal tap if looks more inflammatory
Meds and Test Schedule:
Meds:
Following were IV meds Sue was on as of Sat 22 Nov:
Anti-bacterial: Ampicillin, Vancomycin, Doxycycline (anti-bact)
Anti-viral: Aciclovir
Sedation/Seizure: Propofol, Keppra ( crushed pill )
Below is test record:
Spinal Tap:
- 1st one: Tuesday, November 18, 2008 at approximately 3am
- 2nd one: Thursday, November 20, 2008 at approximately 8pm
- 3rd one: To be scheduled
MRI:
- 1st one: Thursday, November 20, 2008 at approximately 2am ??
- 2nd one: Tuesday, November 25, 2008 at approximately 9pm
- 3rd one: Yet to be scheduled
CAT Scan:
- 1st one: Wednesday, November 19, 2008 at approximately 3am (neck only)
- 2nd one: Saturday, November 22, 2008 ??? (neck and spine)
- 3rd one: Friday, November 28, 2008 (full body)
Following were IV meds Sue was on as of Sat 22 Nov:
Anti-bacterial: Ampicillin, Vancomycin, Doxycycline (anti-bact)
Anti-viral: Aciclovir
Sedation/Seizure: Propofol, Keppra ( crushed pill )
Below is test record:
Spinal Tap:
- 1st one: Tuesday, November 18, 2008 at approximately 3am
- 2nd one: Thursday, November 20, 2008 at approximately 8pm
- 3rd one: To be scheduled
MRI:
- 1st one: Thursday, November 20, 2008 at approximately 2am ??
- 2nd one: Tuesday, November 25, 2008 at approximately 9pm
- 3rd one: Yet to be scheduled
CAT Scan:
- 1st one: Wednesday, November 19, 2008 at approximately 3am (neck only)
- 2nd one: Saturday, November 22, 2008 ??? (neck and spine)
- 3rd one: Friday, November 28, 2008 (full body)
Diagnosis and History:
Current Dx: Meningoencephalitis of unknown etiology
Status: Waxing and Waning mental status, new onset seizures, hemodynamically stable
HPI: 41 yo woman doctor, formerly in good health, found unconscious in her call room after sufferring from a febrile illness approximately 1 week. She went on to suffer a series of seizures that evening. A spinal tap was performed which was consistent with a viral meningitis. Lymphocytes were predominant. JACK to find out exact results of 1st spinal tap. Pt. was tansported to BI Deaconess Hospital for further treatment. There she was started on Propofol and Keppra for anti-seizure Rx. She is on continuous EEG monitoring - so far activity c/w microseizures. She was placed on Acyclovir for anti-viral treatment and ___________ for anti-bacterial Rx. She had a head CT and MRI which were unremarkable. Tests so far that were (-) included enterovirus, EBV, Lyme, and Toxoplasmosis. Gram stain (-) and cultures (-).
Pending tests include EEE, CMV, West Nile, Parvovirus B19, Bartonella, Mycoplasma, Listeria.
HIV not done due to MA state law!
Pt. is currently unresponsive, recently intubated due to rising CO2. Her BP 110/70, HR 95 with no supportive therapy. CXR may have shown a small pneumonia.
PMH: 1) HSVI-occasional outbreaks
2) Pyelonephritis
PSH: 1) Strabismus surgery x 3
2) Fallopian tube removed due to cyst
Status: Waxing and Waning mental status, new onset seizures, hemodynamically stable
HPI: 41 yo woman doctor, formerly in good health, found unconscious in her call room after sufferring from a febrile illness approximately 1 week. She went on to suffer a series of seizures that evening. A spinal tap was performed which was consistent with a viral meningitis. Lymphocytes were predominant. JACK to find out exact results of 1st spinal tap. Pt. was tansported to BI Deaconess Hospital for further treatment. There she was started on Propofol and Keppra for anti-seizure Rx. She is on continuous EEG monitoring - so far activity c/w microseizures. She was placed on Acyclovir for anti-viral treatment and ___________ for anti-bacterial Rx. She had a head CT and MRI which were unremarkable. Tests so far that were (-) included enterovirus, EBV, Lyme, and Toxoplasmosis. Gram stain (-) and cultures (-).
Pending tests include EEE, CMV, West Nile, Parvovirus B19, Bartonella, Mycoplasma, Listeria.
HIV not done due to MA state law!
Pt. is currently unresponsive, recently intubated due to rising CO2. Her BP 110/70, HR 95 with no supportive therapy. CXR may have shown a small pneumonia.
PMH: 1) HSVI-occasional outbreaks
2) Pyelonephritis
PSH: 1) Strabismus surgery x 3
2) Fallopian tube removed due to cyst
Consultant Comments
(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.
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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