Update on 12-20

I saw Susan yesterday. She already seems so much better: her speech is normal (not slow and slightly slurred), even though she tells me that her phenobarbital level is still around 55. She is able to walk without assistance, but is wobbly and ataxic and needs to be guarded. Her gait gets better when she patches one eye. She doesn't use a walker.

She had some twitches of her right hand, which she had some voluntary control over. In the past, she's had twitches there (in the thumb) which were thought to be seizures. She is also occasionally seeing colored lights that don't exist in her far right field of vision, which are transient and last a few seconds. I wonder if these could be seizures, but I just read that phenobarbital can cause visual hallucinations as well as anterograde anmesia. So, maybe it's just the phenobarbital. 

I have suggested acupuncture, and gave her the name and number of an acupuncturist, in case they don't have acupuncture at Spaulding.  That may help her body and brain heal itself more quickly. 

She is doing cognitive therapy with playing cards, including some numerical challenges which were -- challenging. Her memory seems better but she has some trouble still with short-term or "working" memory still and this is upsetting to her. She seems to know unchanging things like medical facts just fine.  For therapy yesterday, they had her bake chocolate chip cookies. They were good!!

Her appetite is picking up and she's often very hungry. She is very thin. When she arrived at Spaulding she weighed just 99 pounds, and she is 5'5". 

Monday 12/15/08 Medical Update

In no particular order - here are some random updates gleaned from doctors over the past week:

- One of Sue's colleagues suggested that she should have baseline hearing and vision test.

- Sue has been seen by Dr. Turon, a Neuro Opthamologist. Dr. Turon beleives that Sue suffers from two vision related conditions. 1) Simultanagnosia 2) Optompheris (did not get the correct spelling of this - do not know what this is). The doctor suspects that these conditions should improve over the next few weeks. We are supposed to make an outpatient appointment with Dr. Turon to follow up on these in about 1-month.

- Neither of the above conditions are related to the childhood Strabimus that Sue had. Sue is reporting double vision as she recovers. We beleive that this is because her brain has not yet learned how to supress the vision in one eye.

- The right eye lid is also a little droopy.

- The Parvovirus B19 lab results came back. The results are inconclusive to conclude that Sue had this virus in the past few weeks. The lab did not want to test because they felt the sample #2 was too old. They tested it anyway. The IGG of sample #2 was 5.84 vs sample #3 was 5.58. The IGM of sample #2 was 10.28 vs sample #3 was 5.56. It is suspected that the old sample may have been too old and thus the results are skewed and thus inconclusive.

- Sue has a slight fever today (@100 degrees). Otherwise feeling well and becoming more mobile.

- We have decided on the Spaulding Rehab Hospital. They have a Neurological Program and Tramatic Brain Injury program. Sue will be on the Neurological floor. We are tentatively scheduled to have Sue released from Neurology on Tuesday. This may be delayed due to another MRI or her fever.

- Sue just told me they are going to do a 4th MRI today.

Weekend Update

Posted by Melissa Bartick, M.D.

Susan's come a long way in just a couple of days. I saw her both Friday and today. On Friday, she got her electrodes removed, which had been attached to her head since she first got sick. Today, she had her telemetry leads removed. Today, for the first time, she walked a few steps to the shower in her room, with the nurse and I assisting her. She had her first shower in a month!

In just 2 days, she has gained alot of strength and dexterity in her hands, doing things today that she could not do on Friday. She was even able to stand for a moment unassisted. On Friday, it was tough for her just to transfer and sit in a chair, but today, she was in a chair and looked great. She is still on alot of medication to prevent seizures, so her speech is a little slower it normally is, but she is coming along.

Tuesday 12/9/08 Medical Update

Summary:

- Sue getting moved to Neurology floor this week (Tuesday?). They are aware that she is having intermittent seizures as she is weaned from Versed.

- Sue's memory is much improved from last week. Memory is still waxing and waning. Sue is now cognizant of short term memories. Sue's remembers Doctor Pillai Friday visit plus visitors from Friday. Long term memory seems to be @50-90% restored. She now understands that she is hospitalized at BIDMC - no longer needs to be reminded of this. This change is probably attributed to the reduction/elimination of Versed.

- Jack saw a series of right-neck muscle focal seizures on Monday @6pm. These happened while Sue was eating - not sure if this is related. Neurologist phoned in and advised Nurse to give Atavan. Seizures are being recorded on monitor on the 'F' lines (F3, F5, F7. F2, + ?). There are 5 lines on the EEG monitor that seem to correlate to the seizures. Sue also experienced 'thumb' twitching during this episode.

- Sue motor skills much better than last week. Could not hold photograph last week but is now able to manipulate straw to mouth when cup is held in front of her. Able to hold toast and feed herself. Not able to return toast to side tray. Able to up-arrow bed but having trouble locating and depressing down-arrow on bed.

- Slight fever @100 degrees @6pm.

- Sue started experiencing 'shivers' today. She claims these are because she is cold. ICU doctor aware of shivers and does not think they are related to seizure activity. Shivers do not display in same pattern as focal seizures noted above.

- Sue is now extubated. There was some initial concern that vocal cords were irritated or that she had a cough. I guess we should be watching this closely to make sure no infection is brewing. Sue is now talking. Slightly hoarse but communicating well. Pronouniciation is good but Phenobarbital or other risidual meds have her a little drunk.

- Physical Therapy @1x per day. Legs are weak to stand on but moves them well in bed. Possible right side affects of focal seizures. Right leg was hard to move last week. Moving ok now but possibly affected during focal seizures. Sue able to sit herself up and roll over in bed.

- Sue ate 1/2 bowl of chunky chicken, noodles, and carrot soup. A few bites of Macaroni & cheese. Some pudding, jello, and apple sauce. Drank chocolate mik, apple juice, and water.


Meds:

- Final dose of antibiotics today. Sue is now off of ALL antibiotics
- Received final dose of Versed yesterday.
- Keppra (Orally)
- Phenobarbital 200mg x3 per day?
- Ativan (as needed to control focal seizures. This just re-added to the mix post-Versed).
- Heparin belly shot @2x day
- Motron (as requested for menstrual cramps)


Doctors:

- Dr. ? (ICU - Not sure who is lead doc this week. Dr. Patel last week. Dr. Gilmartin two weeks ago.)
- Dr. Chrisnamurphy (Neurology - specializes in seizures in Women. Dr. Herman is back on in 1-week)
- Dr. Wright (Infectious Disease. Replaced Dr. Pillai/Dr. Eliopolous)
- Dr. ? (Ophthalmology - Double vision)


Tests:

- Positive test for Parvovirus B19.
- CSF #2 being checked for Parvovirus antibody for comparison to CSF #3.
- Still waiting on EEE, WNV, and others.
- Two HSV tests were negative
- No new MRI's scheduled.
- Chest x-ray @6pm

Parvovirus B19 infection

BIDMC test came back positive. This is Fifths disease and has been going thru the Stow school system.

Wednesday 12/3/08 Medical update

- The new Neurological attending doctor changed Sue's phenobarbital from one large dose per day to three boluses per day. This change seems to make a positive difference. Sue went about 24 hours without a seizure. Though she started to have focal seizures again this evening.

- There is now a chance that Sue may be weaned off the Versed medicine on Thursday and extubated on Friday. So we may not have to go the tracheotomy route.

- Sue reported some vision problems today. She has either double vision or decreased vision in her right eye. I think an ophthalmologist will be consulted.

- I spoke to the Neurological Fellow today about the results of MRI #3. It seems that MRI #2 showed 5-10 lesions. These may have been in five sections of the brain. MRI #3 showed fewer and smaller lesions. Something about 'flairs' - this might be the type of MRI images. Also something about edema, some of the abnormal areas contained water? I will speak to Neuroglogical attending (Dr. Chrisnamurphy) Thursday AM.

- We quizzed the Neurlogist on whether the focal seizures are really seizures or just twitches. They are pretty confident they are seizures. Many do not show up on the EEG because they are coming from very small sections? They do see some of the focal seizures on the EEG.

- Today is Dr. Pillai's (ID doc) last day.

Tuesday 12/2/08 Medical Update

Spoke to Dr. Patel (MICU Attending) on Tuesday.

- Preliminary results from MRI #3 were favorable. Dr. Patel mentioned that they still see inflammation but I sense that there is less inflammation. He started to refer to neurological terms like 'Flair' and I started to question him on what that meant. He recommended that I speak to the Neurologist to get the info first hand. I will make a point of meeting with Neurologist today. Let me know who is available to conference call on this update so that we ask all the right follow up questions.

- Sue continues to exhibit increased arm and leg movement. Her hand and arm movements are becoming steadier. She is still not well enough to write with a pen or hold photos but is attempting lots of hand signals. Sue can do thumbs up, thumbs down, A-OK, and the single finger salute (ask Laura Mc about that one).

- Neurology is monitoring EEG and says that seizure activity is much better under control. Current seizure meds include Keppra, Phenobarbital, and Versed. I suspect that these improvements may also be related to the decreasing inflammation (my guess).

- Sue continues to have 'focal seizures' on the right side of her face. These are not painful but she is aware of them. She frowns when she gets them so I suspect that they may have some hidden effect on her thought process. She gets quiet during these periods although she can still yes/no nod if prompted to answer a question during these events. I have also seem some involuntary right arm movements, the arm starts raising on its own. She did this the other day while sleeping and this was witnessed by Dr. Pallai who documented this into the medical record.

- Some on this list are contemplating whether the focal seizures are seizures at all or whether they are just twitches. Not sure, but they seem to be slightly better or shorter when Sue turns her head to the right.

- Dr. Patel has indicated that Sue will probably need a Tracheotomy on Thursday. It seems that Sue will not be weaned off the Versed for another week or so. We are coming up on the 2-week mark for the intubation tube. Dr. Patel said they could hold off it were 3-4 more days but he suspects that it will take another week to get her off the Versed.

- The Tracheotomy will be more comfortable for Sue. She is starting to protest the tube in her throat. They move it each day left and right but I suspect her throat is getting irritated so the Tracheotomy is probably warranted. The Tracheotomy will also facilitate Sue's physical therapy as it will allow her and her Physical Therapist more mobility and freedom of movement.

- Sue is not as sleepy as she was a few days ago. I think this is related to her getting used to the Phenobarbital. They have increased her from one bolus per day to three. I think the plan is to keep hitting her with Phenobarbital until the blood level is suffient to support the reduction of Versed.

- Sue was on ventilator setting 'MMV' most of Tuesday. I understand this to be a manual setting where Sue does much of the work. She seemed to handle this well. Her heart rate is slightly elevated (@100) as Vent tech guy said 90 would be ideal.

- No new lab results in. We estimate that they should be back late this week or first of next week. That will be the 15 days from Spinal Tap #2.

- We are waiting on the Nashoba lab for the Parva B19 virus (Fifths Disease). Fifths Disease is going around the town of Stow as reported by the elementary schools. Sue did have flushed cheeks the Sunday before entering the hospital.

- Sue was visited by her daughter Ally on Tuesday. Ally is 10 and saw intubation picutures before going in and was not frightened. This visit was good for Sue and Ally.

- Sue continues to have spongey memory. I understand that the Versed can do this to your memory. We pretty much have to re-explain what happened each day and assure her that she is in good hands.

Saturday 11/29/08 Medical update

-Spinal tap #3 preliminary results are in. Only showing 2 white blood cells. This is down from 81 (spinal tap #1) and 70 (spinal tap #2)

- Sue has slightly more mobility in her arms.

- Sue continues to have focal seizures. Occasionally these focal seizures seem to rattle her. Some of them seem stronger. They do not hurt her but they seem to cause her some distress.

- I thought doctors orders were to take her off of Versad, but she is still on it. This is probably good since seizures are still occurring.

- Not sure how long she can stay intubated without needing a tracheotomy.

Powassan virus?

I hope thing are going well today. I was just brushing up on my viral encephalitides and paraneoplastic syndromes. I came across this helpful summary article on viral encephalitis-- which it still sounds most likely to be. I found a virus that sounds like a possible cause: Powassan, an arbovirus caused by a tickbite. I'm wondering if this was tested for, or if it could be tested for??

Most of the others on this table sound relatively unlikely-- not in the right part of the world, wrong time of year, wrong symptom complex, etc. http://www.emedicine.com/neuro/topic393.htm

The more I read about the neuro paraneoplastic syndromes, the less likely it sounds. Limbic encephalitis is one of those-- 60% of people who have it have an underlying cancer. Its features do not sound consistent with what Susan has, from what I've read.

11/28/08 Medical Update

There is a lot of information below. Please comment and let us know what u think. thanks jb.

Report from Infectious Disease Doctor (Dr. Pillai)

- The seizures are diminishing. She's now on Phenobarbital, which is sedating. Her fever is down, and is now low-grade. A repeat MRI was done which showed focal lesions in the inferior medial temporal rectus gyrus, frontal gyrus and right orbital gyrus on FLAIR images and was interpreted most consistent with viral encephalitis of the Herpes virus family. These lesions were not present on the first MRI. Since Susan is clinically improving-- more awake, more responsive, and lower fever-- it's unclear if her underlying process is worse, or if the MRI images are lagging behind her clinical improvement.

- Because of the MRI findings, neurologist is wondering if Susan's clinical improvement is due to better control of her seizures, of if the underlying process, whatever it may, is actually improving. Therefore, they are considering a brain biopsy to see what these lesions are, and a repeat lumbar puncture to send for antibodies that would suggest a paraneoplastic process as the cause (eg, an underlying cancer as the primary cause, which is secreting a substance that would cause her neurologic picture). We still do not have results of some of more unusual viruses that were sent off. Susan had a total body CT scan tonight, looking for tumors or other clues as to what is going on in her brain.

- Regarding Paraneoplastic – this does not usually have a fever. So maybe we don’t have to worry about this one so much.

- Today Jack and Melissa talked to the ID consultant, Dr Pillai. He thought it was reasonable to ask the neurosurgeons if any of the lesions were easily accessible. Chances are, it wouldn't be done until next week. By that time we may have more information: Susan may be alot better, and/or some of the other tests might be back. It also may be reasonable to repeat the Herpes tests, which were initially negative, to see if they are now positive. He mentioned that tb is considered unlikely, as is rabies. Of note, an ophthmalogic exam was done last week and did not show retinitis.

- Susan is now on Acyclovir, Doyxcycline and Ampicilin, to cover Herpes, Rickettsial or other tick-born disease, and Listeria, respectively. She is not on steroids. She is on Phenobarbital and Versed (midazolam) to control her seizures.

Report from Dr. Herman/Dr Eckstein (Neurology) and Dr. Patel (MICU):

- There is still no diagnosis for the ‘Primary Process’. Since we are now getting conflicting data points (Sue responding well but negative MRI), the doctors are looking more closely at other non-viral root causes.
- Though ‘Infection Process’ is still the number one most likely root cause.
- The 2nd MRI ‘looked’ like HSV but HSV was ruled out last week when the test came back negative. Dr. Pillai has seen cases where the first test is negative and a second later test is positive.
- There are multiple foci on MRI #2. These foci may be referred to as lesions or areas of inflammation. They are not saying.
- Something about …. Increased signal could be inflammation, infection, or swelling
- Abnormalities in the cortex
- Several areas of increased signal inflammation, infection, and/or swelling which are close to seizure areas
- Put dye into her to ‘look at contrast’ and the dye did not leak into the brain
- No indication of stroke
- No bleeding in the brain
- Inflammation is patchy and this makes it look like something other than encephalitis.
- Area involved is deep in the surface of the brain
- Hers is patchy and sketchy all over the place
- It is a little atypical for infection
- Looking for other inflammatory ailments. Lupus has been ruled out but looking at other things like Rheumatoid and other auto immune conditions.
- Lymbic Encephalitis is another thing they are considering. This would make sense as fevers can be intermittent if this is what she has.
- Neurologists think that seizure control is the most likely reason for recent improvement. This could mean that there are other reasons still unknown for Sue’s condition, so the doctors are now widening their consideration of other root causes.
- Visual seizures (facial twitching and hand moving) are so small that they are not being captured on the EEG but are visual.
- Between 1pm-5pm today, 1 seizure was captured on the EEG that lasted for only a few seconds.
- Jack saw about 4 focal seizures during that same period of time. 2 of these may have been stimulated by coughing. Sometimes stimulus (coughing, emotions, etc) can cause those seizures
- Sent of more blood test to check for auto-immune diseases, such as rheumatoid arthritis, lupus (although already tested negative for lupus), etc.
-



Next Steps:
- Get results of full body Cat-scan (done this evening) to check for any tumors elsewhere in the body
- Repeat spinal tap (CSV) so that fluid and blood can be sent out to research labs to check for paraneoplastic syndrome. Will also compare to see if white blood cell count is improving (1st test count was at 80; 2nd test count was at 71)
- Jack signed form authorizing paraneopalastic tests to be sent out. Results could take 1-4 weeks.
- Check for auto-immune vasculitis
- Most likely is still Viral encephalitis (meningeoencephalitis?).
- May consider having neuro-muscular perform test on arm strength however, will ask them if it is worth it at this point. May be that Sue is just very weak from being in the ICU. This tests nerves and muscles. Sue’s limbs are very weak. They are not sure if this is normal due to hospitalization in ICU or if it could be Vasculitis.
- A brain biopsy is now being considered by Neurology. Dr. Pillai does not think it hurts to consult with the brain surgeons but wants to see results of PCR and other tests first. Some of the tests (EEE, WNV, …) can take 10-15 days, which means they could be back next week.
- This surgery would be for next week and they would extract tissue so that cells can be analyzed and compared for infection, inflammation, and cancer.
- Dr Kiriakoplis (Neurolgy) will be rounding on Saturday
- Dr. Pang (Neurolgy) on Sunday
- Dr Krishnamurphy (Neurolgy) takes over for Dr. Herman on Monday for about 2 weeks.
- A Petscan can be considered but Sue needs to be off of Respirator for this. A Petscan could uncover cancer if it is hiding and Catscan does not show.
-


Other Observations:
- Sue is doing real well with the Ventilator. The RATE is set for 12 but Sue is breathing 16 times per minutes. The Respiratory Tech was real impressed with her coughing. There is some gurgling but she is able to cough on her own to help clear it.
- Sue is a candidate to come off ventilator once her she is weaned off her sedation meds.
- There is no talk about a tracheotomy. Some on this list have mentioned that this may be a necessary next step if she is on the ventilator for more than 1 week.
- The plan is to take Sue off of Versad on Saturday, leaving her only on Phenobarbital. This could allow them to take Sue off the ventilator in the next few days.
- Temperature high was 101.1 today. Sue’s hand are no longer cold but body temperature
- Sue was VERY responsive when the shift changed Friday @7pm. She raised both arms as new Nursing team entered the room. This was done without being asked. She was showing off for the nurses to show how much she is improving. This was the best I have seen her.

11/27/08 Medical Update

Sue was very medicated today. She was still able to respond to commands - squeeze hands, wiggle toes, and close eyes - but slept most of day. Here is what is new:

- The preliminary results of the 2nd MRI are different than the 1st MRI. We should probably discuss this in more detail so that I know what to ask ...
- The preliminary results are similar to other MRI's that were diagnosed as HSV.
- So the doctors will continue with the Acyclovir treatment.
- Sue is being loaded with Phenobarbital. Whereas this med made her giddy the first evening, it seems larger dose combined with Versad are knocking her out. This might be normal during the early stages of loading her system with this med.
- Although Sue was snowed with meds, she was still responsive when I asked her to acknowledge me. So I let her rest and kept interactions to a minimum.
- I saw fewer focal seizures today but did see at least 3 in the five hours I was with her.
- ID doc has recommended that we re-start Ampicillin. This antibiotic was discontinued earlier in the week. I think this decision is prompted by the results of the 2nd MRI. This is a precautionary action. There is low toxicity with this antibiotic and it can be discontinued again as warranted.
- The ventolator settings were turned down so Sue would use her lungs. This seemed to be ok but at one point Sue woke up and was startled and got very anxious. Her heart rate went up to 120-130 and her breathing was labored and shallow. The ventolator made those quacking sounds and it displayed 'high frequency' warning. They made some adjustments and Sue's breathing pattern and heart rate returned to normal.
- Nurse put on velcro shoe-like things on Sue's feet. This is a preventative action to protect her feet.
- Fever is down. Temperature is @98.5. The cooling blanket is no longer being used.
- I suppose there will be another MRI in a few days for comparison sake?
-

Wednesday 11/26/08

Sue continues to rebound. Here are some highlights:

- She moved her arms to hug me today
- Her memory is waxing and waning. She remembers something one day but does not recollect it another day. Overall her memory seems to be coming back.
- Sue had many focal seizures today, despite being on Verdant drip, Keppra, and Dilantin.
- The Neurologist switched her off Verdant and onto Phenobarbital today. I think they are discountuing Dilantin as the levels in her blood are not high enough.
- Making progress on the ventolator. But she shook her head when i asked her if she wanted us to take it out. Earlier in the day she was looking forward to getting it out. She is tiring since the Phenobarbital is kicking in.
- Moving legs today.
- Very alert and aware of many things today. Able to turn head to look at doctors and nurse on either side of bed. Also tracking for Doctors now.
-

Daily Updates

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).

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

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)

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

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.