|Australia||Dr Thomas Kramer||Ballarat Base Hospital|
|TX, USA||UT Southwestern Medical Center|
|NH, USA||Lahey Clinic in Burlington, MA|
|Bourne, UK||St. Mary's, Paddington, London|
|UK||Cambridge Centre for Paediatric Neuropsychological Rehabilitation.|
|WI, USA||Dr. Fredrick Edelman||American Family Children's Hospital|
|NY, USA||Dr. Weinstock||Buffalo Children's Hospital|
Dear Ben, Thank you for posting Dr Thomas Kramer as a highly recommended doctor. Dr Kramer and another Neurologist, Dr Mandy Lau (pronounced Low) were both instrumental in diagnosing ADEM, which in Australia is very rare. Dr Kramer also works at Geelong Hospital, were I had the Plasma exchange treatment, which thankfully stopped the unknown virus(which I called sniper) I would also like to pay tribute to the hospital staff, the blood bank for providing the plasma for both the IVIG and plasma exchange treatment, without all of this, I do not know were I would be. I thank God for all of them.
Your Friend and ADEM work in progress Rob (Beaufort)
Is it too late for my son to get Plex? He got sick 3 months ago, 12/29/12.
TX, USA Houston, Texas Childrens Hospital. Timothy Lotze, MD.
I still consider it a miracle that Greta was sent to Dallas Children's Medical Center and the specialists that saw her included those from UT Southwestern. We've got to get the word out, because ADEM is rare and even more rare in kids and so it doesn't get diagnosed correctly soon enough to really help them. We should have many more doctors and clinics to list that know about ADEM and how to treat it!!
Does anyone know if work is being done to determine whether there is a genetic/immunilogical component? My husband and I would be willing to undergo any testing to see if we are carriers, or pass on some kind of gene that has made 3 of my sons susceptible to this. I am concerned for my 3 other children and 13 grandchildren.
It is an autoimmune disorder and it appears my extended family has various autoimmune disorders, but Greta is the only one with ADEM. For a few generations, both sides of the family and branching out we have Crohn's, thyroid, Ulcerative Colitis, Sjogren's, Multiple Sclerosis and Fibromyalgia. Not sure where this comes into play with ADEM, but they all are autoimmune. Maybe that's a start?
Yes, specific HLA subtypes are predisposed to autoimmune than over. We have ulcerative colitis and crohns in our family and I am fairly certain that’s what put out little son against this disease.
3 of my sons have had 6 incidents of some form of brain inflammation (encephalitis or meningitis) over the past 35 years. It was always a post-infectious, inflammatory reaction, which seems to have an auto-immune component. They have undergone so much testing and no one comes up with anything specific except that it is an inflammatory reaction in the brain to flu or sinusitis. After happening so many times, including my current son with ADEM who is 33 and on his 3rd CNS inflammation(others incidents were not diagnosed as ADEM, but he was very young.), we would love to try and get at the root of it. My husband and I are willing to travel for testing or research to try to understand why this is happening.
I will pray for Greta's complete healing!
We've had a great experience with Dr. Keith Van Haren at Lucile Packard Children's Hospital in Palo Alto, CA. The hospital is great and we really liked Dr Van Haren.
I would also recommend Oakland Children's Hospital where we did in patient rehab.
I highly recommend Johns Hopkins Children's Center in Baltimore. My daughter just spent about 8 days there, being treated for ADEM. She was released 2 days ago, and is recovering wonderfully. They spent no time in diagnosing her, and found out within an hour of the MRI. We could not be more grateful at how wonderful they were with her care, and providing follow up care.
Hi, who was seen by Dr. Edelman in WI? Please explain more. Thx
Dr Miskin - NYC Lenox Hill Hospital
Dr Anupam Battacharjee, Lister Hospital, Stevenage, Herts, UK and also the Royal Free Hospital, London. Neuro specialist. He did everything he could for my 31 yr old daughter and pulled out the stops for her, even though they didn’t all work out. A kind and thoughtful doctor with a quiet wicked sense of humour.
There was also a Dr Yuan at the Royal Free at the time who was doing his consultant neuro attachment. He came from Australia and was our saviour on a daily basis. He moved onto Queen Square Neuro Hospital and then we lost track of him. If anyone comes across him somewhere sometime I would love his contact details.