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Suggest Treatment For Extensive White Matter Damage In Brain
Question: Hi, I am looking for a neurologist who has experience with toxic leukoencephalopathy. Our 22 year old son has been in icu for 10 days and is in a semi conscious state. He has good cough reflex and is able to move his feet periodically on command; same with opening and closing eyes. He has a tracheotomy but there is concern his brain is not properly communicating with his lungs. He had an brain mri 8 months ago and his most current mri shows extensive white matter damage. We are in Calgary and we have a great neuro ward but there has been only 2 cases of toxic leukoencephalopathy at this hospital. I understand that many more are seen in India, but not necessarily documented; I was hoping that a neurologist with more experience with this disease might be able to provide some helpful suggestions. Thanks
Brief Answer:
My reply is below.
Detailed Answer:
Hi,
Thank you for posting your query.
I have noted the details of your 22-year old son. It is unfortunate that he has suffered extensive brain damage due to toxic demyelination.
As you mentioned, we do see a lot of similar cases in India. The good thing about them is that most people recover well, especially at younger ages.
In the acute phase, we use high dose steroids, plasmapheresis and IVIG injections for treatment.
At this stage, the treatment is mainly supportive, with care about his breathing, maintaining his blood pressure, nutrition, physiotherapy and prevention of bed sores/chest infection/clotting in leg veins.
In order to assess his brain functions, in addition to clinical examination, EEG, evoked potential studies, and PET scan are important.
I hope my reply has helped you.
I would be pleased to answer, if you have any follow up queries or if you require any further information.
Best wishes,
Dr Sudhir Kumar MD (Internal Medicine), DM (Neurology) XXXXXXX Consultant Neurologist
Apollo Hospitals, Hyderabad,
For DIRECT QUERY to me: http://bit.ly/Dr-Sudhir-kumar
My blog: http://bestneurodoctor.blogspot.com/
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Are you able to tell me the specific protocol for this drug regime so I can specifically provide the data to the ICU team and at what time do you usually begin to see improvements. Also; is it possible for the neuro dr contact you for further indignation. ThxIs toxic leukoencephalopathy the same as toxic dymylination?
Brief Answer:
My reply is below.
Detailed Answer:
Thank you for getting back.
Following are the drug regimens
1. Inj. Methylprednisolone 1 gram daily for five days, given as infusion over 90 minutes.
2. Plasmaphereis is done on alternate days or daily depending on the severity of the case.
3. IVIG (immunoglobulin) injections: 0.4 gm/kg body weight per day for five days. given as infusion over 4-6 hours.
Improvement depends on the severity of the illness, and in this case, it may take a few weeks to months.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Should this be done even though he has now been on life support for 10 days? He is fighting an infection and is pn antibiotics. Did we miss the acute phase?
Based in your experience; how long could it take for a severe case like XXXXXXX to start seeing improvements in following commands. As I mentioned, there has been very little progress and the doctors here are not terribly optimistic.
How many cases have you dealt with similar to this? Is it often the case that no commands are bring followed at this stage! Are you available for a hired consult?
Brief Answer:
Thank you for getting back.
Detailed Answer:
The best responses to treatment are seen if they are started early especially the first few days. However the effect is well seen even if the treatment is delayed.
He may take 6-8 weeks to show good improvement. The most important point is to not give up at any point of time as the improvement is very gratifying to see in the end.
I have seen more than 1000 cases of leukoencephalopathy/demyelination. We refer to them as ADEM.
I would be pleased to be the hired consultant for this case.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Are you available for a call? Can you send me your biograpghy and what hospital you are affiliated with? The neurologist here feels the protocol isn't suitable for the symptons presented by my son but he has little experience with this syndrome. Thx
Brief Answer:
My reply is below.
Detailed Answer:
Thank you for getting back.
I prefer email communication.
Please visit the following link to get my CV/biography
http://members.tripod.com/sudhirkumar_5/neurologist/id5.html
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Dr. Kumar: As indicated above; the Doctor does not feel his current symptoms do not warrant this protocol.
He has indicated that some of this would have been done initially but that it is not helpful now that we have moved into the support stage.
His vitals are stabalizing but he is not able to consistently breathe without life support and he is not doing any obey commands with hands or feet.
Has it been your experience that at two weeks he would not be obeying any commands except opening his eyes? The Dr. here says this is a very negative sign. Have you found that many do recover over a long period even though they are so silent at the two week mark?
Also, if you feel he would still benefit from your recommended protocol are you able to send me any documented information that would add credibility about this protocol so that I could print for the Doctor.
Brief Answer:
Thank you for getting back.
Detailed Answer:
1. I agree that the maximum benefit would occur if treatment is started early (within the first few days), however, benefit can occur even upto one month.
2. Yes, improvement gets delayed, if immunotherapy is not given or if there is severe brain damage. So, we can expect this kind of slow improvement in those two situations.
3. Supportive treatment should be continued, as recovery may get delayed in some cases, and we should not give up the best care at any time.
4. I would require MRI scan reports and a case summary by your son's neurologist, for me to formulate the best treatment plan at this stage. If you can upload them here, it would be good.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
His doctor says he does not have ADEM and swelling has gone down in his brain. He had a EMG and nerve responses between hand and Brain are normal. Doctor doesn't want to use immu therapy because he doesn't feel it would help and immuglobin is needed for other patients in current dire straights. In our medical system individuals cannot donate for specific other individuals and immunoglobulin comes from a blood bank. This said if I could provide credible documentation from you possibly I can convince our doctor. As XXXXXXX is 22 and considered an adult and we have no power of attorney it will take longer to obtain records to send you. Can you provide us with some of this type of information.
Brief Answer:
My reply is below.
Detailed Answer:
Thank you for getting back and providing more information.
I agree the medical system is entirely different there.
In our country, treatment is at the sole discretion of patient's family and doctor. If the doctor feels the treatment would work (based on his personal experience, even without any data in literature) and the patient party is willing to pay for it (less than 1% of Indian people have medical insurance), then, the treatment is given. Here, there is no shortage of IVIG.
We, in India, see a lot of patients, but do not publish them in literature (we do not have time, as there are only 1500 neurologists for a population of 1.25 billion Indian people, I am not counting the foreigners who are coming here as part of medical tourism) and also because there is no incentive here for publishing them.
So, several neurologists here would be telling you their success stories in toxic leukoencephalopathy but without much proof in published literature.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Hello Dr Kumar;
Just following up on our previous communications; XXXXXXX is still in ICU and is still, with the exception of opening eyes on command, pretty non responsive. He has been on and off vent bit us back on vent due to pneumonia, bacteria bug and he got pneumothorax. In the last few days though he has had begun having bouts of increased heart rate episodes where his rate can increase to between 120 to 150 and stay at these high levels for long periods. He also seats profusely at times. They are given him morphene to try to settle him down. Do you have any comments; has this been your experience with these types of cases? Thx
Brief Answer:
Thank you for getting back.
Detailed Answer:
Thank you for getting back and providing an update on XXXXXXX
Yes, I have also had similar experiences in a few of my patients. There are two or three likely explanations for these symptoms:
1. Autonomic dysfunction- some patients have involvement of brainstem. This results in dysfunction of autonomic nervous system. Features of this include profuse sweating or lack of it, fluctuations in heart rate and blood pressure (either high or low) and retention of urine requiring Foley's catherization.
2. Second possibility could be discomfort due to ventilator (results in "fighting" the ventilator). This is more common in people who have partial recovery of consciousness.
3. Thirdly, it can happen due to infection such as pneumonia, where the heart rate goes up and blood pressure comes down.
The exact cause can be ascertained by the treating physicians and treated accordingly.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Probably our final question; we had a meeting with the neurologist today to discuss the MRI and Zack's lack of responsiveness. He is having a family meeting this Sunday and will recommend XXXXXXX is taken off life support. His reasons are: new MRI shows 100 percent of white matter is affected and there appears to be necropathy. He also stated we can probably keep his heart going but there would in his opinion be any type of recovery or life going forward for XXXXXXX My question to you is based on this new information would you suggest there is still hope for him to be able to make a reasonable recovery. I am asking you this based on your dealings of 1000s of similar cases. Thx Susyn
Brief Answer:
There is little chance of meaningful recovery.
Detailed Answer:
Thank you for getting back.
Based on the information provided so far, it appears that XXXXXXX has little chance of making a meaningful brain recovery. Even if he survives, there would be severe neurological deficits such as coma, lack of ability to speak, full dependence for activities of daily living, etc. So, I would agree with your doctor's approach in this case.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology)
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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