Seizures due to autoimmune encephalitis

Posted by nh1973 @nh1973, 6 days ago

My previously healthy 14yr old daughter had a seizure and after days of testing was diagnosed with autoimmune encephalitis. All of the specific antibodies have come back negative so so far, it’s just a blanket diagnosis. She was initially treated with high dose steroids and IVIG, recovered almost fully, and was released after 17 days. 10 days later, had a seizure and recurrence. More steroids and IVIG, then ultimately plasmaphoresis and rituximab. We are currently a little over 2 weeks out of the hospital and are now struggling with seizures. She’s on both Keppra and depakene that we keep going up on. For the most part hers are focal, and short, which is good I guess but still really messes with her, especially since she’s just starting high school. And they happen most every day. I’m just looking for some support, advice, encouragement…I don’t know, it just feels so lonely and isolating. I don’t know anyone else that’s ever gone through this.

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Chris Gautier, Volunteer Mentor | @santosha | 3 days ago

Hi @nh1973
Welcome to our Connect group!
I understand how isolating an epilepsy diagnosis can feel. The support I've found in this community has been invaluable, and I hope you'll find the same comfort here.
While my knowledge of autoimmune encephalitis is limited, I've noticed valuable past discussions on this topic that might be helpful.
What type of encephalitis? Autoimmune, limbic, or encephalopathy?
https://connect.mayoclinic.org/discussion/is-it-autoimmune-encephalitis-or-encephalitis/
I'm also connecting you with @valm, who has shared her experience with autoimmune encephalitis:
https://connect.mayoclinic.org/comment/174620/
Regarding your daughter's daily focal seizures, I can imagine how challenging this must be for her and you. I experienced focal seizures for about 10 days following my COVID vaccination, and it was truly overwhelming. So, I have some sense of what she might be going through.
To better understand her situation, could you perhaps share:
- Does she remain aware during the seizures, or does her consciousness become impaired?
- Has her neurologist classified these as simple partial seizures (auras) or complex partial seizures (focal impaired awareness)?
Understanding these details might help connect you with others who have similar experiences.
I'm hopeful you'll connect with others here who understand your journey and can provide the support and practical advice that makes all the difference.
Chris

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lasks | @lasks | 2 days ago

My first symptom of AE was a seizure. Fortunately , Lamictal has been able to control them.

nh1973 | @nh1973 | 2 days ago

In reply to @santosha "Hi @nh1973 Welcome to our Connect group! I understand how isolating an epilepsy diagnosis can feel...." + (show)

They really haven’t classified them. And she does know they’re coming and remains aware during them. We meet with an Immuno-neurologist in October and have another MRI. Thanks for the links, I will definitely check them out.

Chris Gautier, Volunteer Mentor | @santosha | 14 hours ago

In reply to @nh1973 "They really haven’t classified them. And she does know they’re coming and remains aware during them...." + (show)

Good Morning @nh1973
Thank you for this additional information. Usually, when someone remains aware during a seizure, it's typically a focal aware seizure, also known as an aura. However, please do check this with her doctor.
Curious to learn more, I looked into seizures related to autoimmune encephalitis on the Epilepsy Foundation website, finding some relevant information that aligns with what you've described. I'm sharing it here with you:
Seizures due to autoimmune encephalitis
https://www.epilepsy.com/causes/autoimmune
According to the Epilepsy Foundation, focal seizures are indeed the most common type in autoimmune encephalitis cases and frequently occur multiple times per day, which matches your daughter's experience.
Most encouragingly, the site notes that early diagnosis and prompt treatment of autoimmune epilepsy can potentially lead to seizure freedom. So, there's a genuine reason for hope. 🙏
October is almost there! Please let me know how the appointment with the immuno-neurologist went and share an update when you have the chance.
Wishing you all the best!
Chris

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