Anti-NMDA encephalitis

My 8 year old son has been in the hospital for 5 months now. Within 5 days after being admitted he stopped talking, walking, and lost all basic functions then ended up in ICU because he hadn't slept in 5 days and was having seizures. He was in ICU for a month and had unnecessary surgery to remove a tumor that was not there. The treatments he has had are Ivig, steroids, rituximab (6 doses), 22 rounds and counting of plasmaphersis, 2 doses of cyclophosphimide (2 more tentatively). He is finally "awake" and relearning everything, however, still not talking. I haven't heard his voice in 5months :0( He still has a very long road ahead of him. I'm scared. I don't know what to expect anymore and I don't know what to do. I remain by his side and have quit my job to do so. I don't know how much longer we will be in the hospital but everyday is a new day.

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Aloha LDawes, be sure to have the doctors explain everything that's going--what they're doing, why they're doing it, what are your options, etc. We lost our son, Michael, less than 48 hours after being admitted to ER, and the questions continue to flood our minds. We were told "things will get worse before they get better," but for us "better" never came. Be aggressive in your search for answers.

We will pray for your son and your family. He needs you by his side, and we will pray for your strength.

It's hard to see your child's life in someone else's care, so we will pray for you to have peace and comfort.

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Thank you!! I'm sorry for your loss.

God bless you and your family!!

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Hello LDawes

my son is 5 years old now and faced 2 years ago anti NMDA E...You can read his story but very briefly:
1/ 1 st seizure in April 2010 and get back home 3 days later with no dindings
2/ 2nd seizure in May 2010 and he stayed 2 Months at hospital and get back home without talking, running and...

He started talking again in September 2010 (few words) and now he is speaking a lot (too much sometimes!) but need speach therapist. I would like to tell you the way is long but keep hope and you will have moment of huge felicity because you will struggle with him and defeat the disease!
You have to know this malady is very recent, and docotrs don't know a lot of things about. They said maybe a "gene" could be identified but today nothing has been declared. The important thing is seizure control. Hopefully, my son is seizureless before and after. The seizure he had have benn the revelator of his disease. You have to know relapse can occur but not frequently and it will be very well controlled because they know which treatment to apply immediately.

I will pray for you and you need a lot force to start the fight

Yours trully
Pascal (from Paris, France)

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Hello LDawes,

Stay Strong. It sounds as though your son is getting the correct treatment. My wife was diagnosed with NMDA last year. We spent about 4 months in the hospital and she is currently at home. She had 4 doses of Rituximab, and 6 doses of Cytoxan. If he show no ill side effects from the Cytoxan, I would push for continued treatment. Now, my wife is on oral immuno-suppressant meds (imuran) and will continue to be on this for at least a year.

Recovery is VERY slow, but will happen. Keep the faith...

Neil

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Hello LDawes,

I am so happy to hear your son is doing better. My 12 year old daughter was diagnosed in August 2011 with anti-NMDA encephalitis with ovarian teratoma. One day after being admitted to the hospital due to seizures, she was catatonic. After six weeks in ICU and another six weeks in rehab she was released from the hospital in October 2011. In ICU she underwent steroids, IVIG, and 5 rounds of plasmapharesis treatments. And in rehab she had 4 rounds of rituximab treatments.

Just like most with this disease, recovery is extremely slow. There were times I thought my daughter reached a milestone only to see it fade and not come back until months later. Prayer and a lot of patience is the key. It wasn't until January 2012 that she started responding to commands, February 2012 that she started walking with no assistance, June 2012 that she started talking, and July 2012 that she started eating full meals. My daughter has made a full recovery physically but has a way to go mentally. But overall she is doing much better and I am starting to see the girl she used to be a year ago.

Much of what I learned is by trial and error and speaking with other parents. And if you ever want to talk please don't hesitate to send me a message. Below is a link of a clinical study of 412 patients written by the leading neurologists on this disease. It helped with questions the doctors could not answer.

I will keep you in my prayers. The success rate for a recovery is extremely high. The best thing you'll ever hear is the first time your son says I love you too mommy. I know it was for me. Take care.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3158385/

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Dear LDawes,

The sympathy I feel for you is immense. Please be patient and stay strong. From what I have learned the recovery for your son is good to excellent however will take some time.

May you have strength in your time of darkness.

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