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Greetings all,
My daughter has been recently discharged from a 2.5Month stay in the Hosp/rehab here in California. She was diagnosed with Anti-NMDAr Encephalitis, and will be doing outpatient rehab going forward. I've noticed that several folks here mentioned about going to the Mayo Clinic, can you advise me the benefits of going there? is it simply to get a "second" opinion on treatment and therapy?
Much thanks,
Amy
Surgery Confusion Seizures Fever Pain Memory Prednisone Fibromyalgia Encephalitis
Hi Esmie, thank you so much for reaching out to me! yes I have lots of questions for you which I will direct in email. I specifically have questions about treatment and course that you took.
Regards, Amy
Hi Amy, my name is Esmie and my daughter Neleah who is 7 yrs old was diagnosis with Anti-NMDA-Receptor Encephalitis in December 2008 and is still recovering. Lucky for us Neleah's recovery has been going well. Neleah was hospitalized at Long Beach Memorial and transfered to Ronald Regan UCLA, followed with acute rehabilitation at Miller's Children West. Most of Neleah gross and fine motor skills are back - her long and short term memory also seem to be back. She is currently being treated for speech. If you need to talk, vent, or need added support please don't hesitate to reach out to me. My family was lucky by also getting to know another family that was also diagnosed with the same during my daughter's hospitalization at UCLA which was and continues to be a great support for us. My prayers and best wishes are with you and your family. Esmie
Email: itsmeesmie@yahoo.com
I have been to mayo in minnesota 2x.. while they are efficient, and seem patient friendly (like booking appointments so that you have time in between to get there), overall I was disappointed... I had always thought that the mayo clinic was supposed to be THE BEST.. while I learned some things about my fibromyalgia, my brain damage from the west nile was pushed aside and ignored, which I think that their neuro should have at least given me some info on..I realize that west nile cases like mine are rare, they did look at my migraines and sleep issues, completely ignoring the myriad problems my west nile meningo-encephalitis caused.
Hi Amy. I had two visits to the Mayo Clinic - - one for almost 2 weeks, and one for almost 3 weeks.
Pros:
They certainly covered ground my local docs didn't. The docs (depending who you get) do a decent job of communicating with each other. This is the biggest advantage for the Mayo, especially considering that E patients frequently have symptoms going across a lot of body systems, and docs don't like to talk to each other.
Cons:
QUITE a schlep half-way across the country to get put with some of the not-so-great docs. Some of the specialists missed some obvious things. I don't blame them, but I could have stayed local for that!
My advice? Don't go to the Mayo for the clinic name. Go if there is a specific DOCTOR at the clinic that makes sense for your daughter. That advice goes for ANY big-name clinic.
Best of luck.
Sheep
To Aimsters 37
Two or three months of neuro/psych and cognitive rehab is no enough for the residual that encephalitis leaves. I found this place in WI specialized on brain injury,that tx the kids from coma to be ready to the community life. My daughter doesn't have short or long term memory, after 4 weeks being in wi she is able follow commands and her aggression went down. The window of rehab opportunities is the first 2 years. Im glad for this web site, im able to share my struggles, opportunities, and learn from another experiences.
In oct 08 we went to a Mediterranean cruise days after arrival she developed confusion, fever, and forever migraine headache. Then she had seizure and went into coma x 4 wks. Her HR180-200, BP182/134, T 104 and constantly tremors like seizure. MRI/A shown diffuse brain injury. EEG shown slow brain activities. She has not short or long term memory. She has been in neuro/psych rehab since feb. My question is Does she will recover her memory or she will be normal again?
E generally comes sudden without warning to one's brain and results in TBI. There is no treatment to prevent it before it starts. Once it ends, that's when treatment is possible to ease and cure all pain which comes afterwards. At infancy, I was brought to Mayo since local drs. didn't treat children with seizures. I had 5 years straight without seizures up until teenage years when most bodies change and start growing. I came back home since there were local drs. available by then.
At least Mayo tried finding where it starts unlike back at home cbrocket. It is first towards having optional surgery to remove source of seizures to not have seizures again.
I was told there really is no treatment for E. I havent gone to the mayo was planning on it but I made an app with another neuro giving it one last shot.
I went to the Mayo Clinic in Florida last April. They are polite efficient and run alot of tests. However, they offered no advice to my neurologist about treatment. They just advised him to get me off prednisone. Prednisone is the only thing keeping my symptoms at bay and they had no suggests for alternatives. I would say it did me no good to go other than I feel like I tried. I am just Thankful my local neuro is actually interested in treating me. I believe other people have had better experiences. The problem is they tried to pinpoint a cause and couldn't find one.
rocket
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