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.