prognosis for acute disseminating encephalitis

[snady]

My mom has just been diagnosed with acute disseminating encephalopathy from a brain biopsy that was sent to Johns Hopkins. However the progression of her disease has been unusual according to the MD's. I am getting mixed information as to the prognosis of this disease.  They have told us she will not survive past 6-8 weeks.  She is currently unaware and unresponsive most of the time as of the last three weeks. She is receiving tube feedings and her regular medications.  They are giving her high dose steroids as a last effort.  She had been treated with Gamma knife in Nov. for a suspected metastatic pituitary tumor but also had 'unidnetified' lesions in other parts of her brain at the time but were not really dealthw ith.  So there is a possibility that this has been going on  since Nov of 2000 with a slow progression.  Plus she had been on 40 - 60 mg of Cortef for the adrenal insufficiency she developed after the Gamma knife.  Would these steroids help oin her prognosis?  Have you seen a link between Gamma Knife and encephalitis of this type?  What is the general course and prognosis for acute disseminating encephalitis?  Are there other things we can try?

[Amanda2117]

A related discussion, ADEM prognosis was started.

[mac2gypsy]

A related discussion, help for my friend was started.

[Amanda2117]

A related discussion, ADEM was started.

[Sister Diagnosed w/ADEM]

My sister was recently diagnosed w/ADEM - it seemed diagnosed was a bit delayed and therefore onset of steroids was subsequently also a bit delayed (after significant paralysis, etc).  I am an Occupational Therapist myself w/extensive clinical experience yet not direct treatment w/persons w/this condition.  Does anyone have any information related to prognosis from ADEM - my sister is in a rehab unit (more specifically a spinal cord unit) and they are estimated a 4 week length of stay.  She has good upper extremity movement yet cognitively remains impaired at higher level tasks.  Her lower extremities move somewhat and she is beginning to stand briefly.  If anyone has any information regarding their or others prognosis following rehab I would be most appreciative - my sister was brilliant before and she is really struggling.  Thank you.

[Chano]

My brother has been in the hospital with ADEM since September 17.
We are desperately seeking advice or second opinions.  The hospital he is at they have done a biopsy, plasmapharesis and steroids, and nothing is changing.  The doctors tell us all we can do is wait, but this is not what we want to hear.  He has lost amost 100 lbs, this was a very energetic 40 yr old chef, weighing in at 240.  This is why now seeing him in this condition is not right.  Please help, we are willing to transfer him to a different hospital or even a different state.

[CCF-Neuro-M.D.-GS]

Sorry to hear about your problem. ADEM is classically described as a uniphasic syndrome associated with immunizations or vaccines, or systemic viral infections Usually patients have a rapid progressive course of neurologic problems. It is often confussed with multiple sclerosis. usually patients have a prodrome for several days of fever, malaise, followed by an abrupt neurologic decline They are usually encephalopathic and this can range from confussion,  to coma, and a multitude of neeurologic symptoms can be prsent. The mortality rate is about 10-30% with good recovery in 50% of patients. poor prognosis is correlated with severity and abruptness of the clinical symdrome. The current tratment of choice is steroids. In some cases they have tried plasmapharesis (essentially cleaning the blood). All of this of course is based on the findings on biopsy.
Not sure what else I can tell you but we will hope for the best for you and your family at this difficult time, gs

[Colleen Johnson]

You may want to check out this web site for additional information  http://communities.msn.com/EncephalitisGlobal

[Colleen Johnson]

Sorry to hear about your Mom, my daughter was diagnosised with acute disseminated encephalomyelitis Sept, 99.  She was on IV steroids for 5 days and then 5 days IV gamma globulin. Then 40 days later was in a Rehab hospital for 45 days to learn to walk, dress herself and read again.  She has made alot of progress and continues to still work at getting better.  Today she has balance problems, memory and endurance challenges.  She is not the same person she was before she got this.  The doctors say she had St Louis Encephalitis and then developed ADEM.  If you want to talk more about this my email is: ***@****
Lots of prayers will help.

[snady]

Thanks for your input.  The diagnosis is encephalitis - more specifically acute disseminated encephalomyelitis - no liver involved and no specific cause identified.  Colleen, The info. re: your daughter was encouraging as we really have no idea which way this thing is going to go.  We move to rehab this week hopefully and the rehab coordinator was optimistic.  Thanks for keeping us in your prayers.  Any idea when the doc's will be answering again?  Thanks again.    Sandy Steblin, Faye's daughter

[BJP]

I am so happy that your mother has done better. Thats encouraging. Solu_Medrol is uusually a good start. Did your mother have encephalitis or encephalopathy? Because in your posting you used both terms and they are different disorders as far as know. One is caused by an infection or virus and one is caused by liver problems and such and caused dementia and altered mental status and can proceed to coma but there is no infection or virus...I could be wrong, but I was trying to collect so info for you since the docs seem to be down right now to post but I am uncertian as to which disorder she has...But in any case i am so very glad she has made a good statrt at recovery and I will pray that it will continue that way for her.
Wishing you all the best......Betty Powell

[snady]

She finished day #7 of solu-medrol, 1gram/day and has had what the doctors call an unexpectedly postive response.  She is now awake more, participating in eating, minimal self-care, gets out of bed with maximal assist. She still has deficits in her speech, memory, and cognitive functioning. They are trying to decide on her new maintenace dose of daily steroids and are thinking about rehab.  We are thankful for her current progress even if it proves to be temporary. Our additional questions :  Can it be predicted whether this is a temporary or permanant improvement?  What are the indicators for determining outcome?Are there other things we should be doing for her treatment-wise.  ( It seems that everyone involved has so little experience with this type of encephalitis that they are using all available resources to guide their next steps.) What resources are there to help us all out?  We understand we are in for a long road ahead and anything can happen along the way.  Thank-you! Thank-you! Thank-you! for your time and information.  Respectfully,   Faye's family!