Avatar universal

What is super refractory status epilepticus and auto immune encephalitis?

Hi my dear doctors
            My own brother  26 years old software employee who is suffering with viral
fever suddenly got a very major seizure attact and got admitted in hospital on May 10 2019.
There the neurologists prescribed to go through different kinds of scans and blood,urine, serum and even lumbar puncture but all the reports are negative.
Meanwhile my brother is getting seizures again and again so that he got shifted to MICU and they informed that even the antibodies panel is negative and the patient gets persistent seizures then this condition is called auto immune encephalitis.
Due to his condition they started giving him IVIG for 5 days following with different kinds of anti epileptic drugs by taking him on to the ventilator support and along with all these they given large doses of Midazolam, Thiopentone ,and ketamine Cycles.
After all these anti epileptic drugs and sedatives the seizures did not control.
So at last they given retuximab and they observed for two more days and then shifted to normal room from MICU.
After shifting to the normal room he got some minor seizures again but they stopped all the IV injections and started giving oral drugs like levipil 1g, Eptoin 100mg, lacoset 100mg, topomac 100mg, Frisium 20mg, wysolone 10mg, to control seizure attacks.

On 19 July 2019 he was given the second dose of retuximab again and during that time he got a very major seizure which he never had before.

Now the issue is he is using all these medicines as prescribed by the neurologist but from the past two weeks he is again getting one or two minor and major seizures per day.

This I informed to the neurologist and from today they started giving a steroid IV called methyl prednisolone 1gm 1 hour daily for 3days following with weekly once and then after monthly once. But today he again got a mild major seizure.

Myself and my family is very much worried about my brothers condition.So let me know what is this condition called super refractory status epilepticus and auto immune encephalitis.
And how it can be totally cured even if the antibodies panel is negative.
Also tell me whether the treatment undergoing for him is genuine or not.

Note: Because of the treatment given in MICU for about more than a month he had a memory loss too.

1 Responses
Sort by: Helpful Oldest Newest
15695260 tn?1549593113
Hello and welcome to the forum. I am sorry to read about your brother. This sounds like a very complex medical issue and working with your brother's physicians who are physically treating him is the best course of action.  And receiving a second opinion can be helpful when you are not sure about the treatment he is getting.  This is especially true for such a dramatic health crisis as this.  

To your questions regarding what is super refractory epilepticus, this article may help you. https://www.medscape.com/viewarticle/751201.  This is an uncommon diagnosis and involves status epilepticus that continues or recurs 24 h or more after the onset of anesthetic therapy.  Status epilepticus is a single seizure that lasts for more than 5 minutes or two more seizures within 5 minutes. This article goes through ways that refractory epilepticus is treated. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4309114/.  Your brother's physicians are working very hard to help him and we sincerely hope that they will be successful.  And this one is in more easy terms to understand https://www.webmd.com/epilepsy/refractory-epilepsy#1.  They may place a device under his skin that will send signals to the vagus nerve as an additional treatment option or remove the part of his brain that is causing the seizures as another.  Hopefully it doesn't come to that.  

Your brother has been diagnosed with autoimmune encephalitis?  This is when the autoimmune system mistakenly attacks healthy brain cells and causes inflammation of the brain. This is the cause of his seizures?  Does he have other symptoms as well?  https://rarediseases.info.nih.gov/diseases/11979/autoimmune-encephalitis  They can treat this with immunosuppressive therapy. If antibodies weren't found, this suggests this is due to an infection. acute disseminated encephalomyelitis (ADEM).  This article has treatment approaches outlined https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712273/.  It does appear that your brother's physicians are following protocol.  

Let us know how he is doing. We wish you both the best.

Helpful - 0
Tqsm for your valuable response doctor.
I will be touch.
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?