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My son just received an AE dx from a peer review neurologist that our insurance company sent out to determine coverage. He said it was based on my clinical observations as a parent and the 2 O Bands they found in his spinal fluid and not blood serum. I don't think this is the proper dx. I think it was the only one he could give because Pandas is not officially on the books yet...In his letter, he wrote that my son had some very concerning symptoms. I as well though feel that the two dx's are closely linked.

 

p.s. We received reimbursement for past IVIG and approval for monthly IVIG if we wanted them.

Edited by qannie47
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https://aealliance.org/clinical-care/grand-rounds/     This is the video.   Autoimmune tx my daughtr is on: Monthly iv steroid, 1g/kg ivig Cellcept Plaquenil Baby Aspirin Augmentin (fron p

Very interesting. How do providers/researchers of AE "feel" about PANDAS/PANS. Do they acknowledge the similarities in theory, symptomatology and treatment? As I know many of us have said time and tim

Powwow what is TX? How do I find the movie you are talking about?   Our DS was more severe like "Brain on Fire" and his Dr said AE. On PANDAS radio there is a good discussion between Dr. T and S

That's really good news Quannie. I am concerned if my son is going to need IVIG. Insurance does not recognize PANS or PANDAS as medical code. AE makes more sense if the antibodies can be found on the brain. However, these things are not always easy to catch either and many doctors are not open to that concept yet.

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It strikes a cord with me. Definitely. My daughter had a month where she alternated between a catatonic-like state and being feral. It was so bad, we didn't leave the house. She stopped talking, eating, bathing. She would cry over everything and nothing. IVIG brought her out of it. Afterward, she seemed weak and almost infantile like. If we went anywhere, I had to push her in a stroller. She was 7 at the time. She also drew a clock like Susannah. Immunomodulating treatments (IVIG and steroids) definitely help her, but they never last.

 

Pow Pow, if I want to rule this out, what should I do? Call Duke? I've already implored our local neuro. We'll see if I get anywhere with that.

Get your doc to watch the grand round video!!

It is meant for doctors anyway. Offer to pay him for an hour of his time to watch it!

 

Excellent idea. Thank you. Tried to message you, but seems your mailbox is full?

 

I cleaned it out- at least a little ;)

I am an e-hoarder.. I admit it.

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Along with identifiable antibodies (though fully aware there are 100s more that are not yet identifiable), do patients with AE additionally have a positive ANA? They mentioned anti-tpo as associated but I didn't hear ANA? maybe I missed it. Just reading and learning here...

DS had identified anti-adrenal antibodies noted on last bloodwork but no one yet seems to know what that means...

 

Many thanks to all who have responded here. Your stories are very helpful. Wishing everyone a successful journey, regardless of the diagnostic name :-)

Edited by ibcdbwc
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Hrosenkrantz: No, he did not come to my house. When the first peer review came back as non-supportive/no coverage, I wrote a long letter describing my son's symptoms and recovery with IVIG, abx, steroids...I took exception to the fact that somebody so far removed could decide how to treat my son. Somehow, miraculously, with my clinical appeal, laced with a little "shame on you", they re-opened the case a gave me full boat for coverage, past and future, along with a written vindication for what we have been dealing with. I would have at least accepted his initial decision HAD he come to my house.

 

ibcdwbc: my son's ANA and dnase was only slightly elevated, and within normal range...but I wondered if the fact that it was elevated at all spoke to something.

Edited by qannie47
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I've wondered if this isn't the case for many or most of our PANDAS kids or perhaps the kids labeled PANS when no strep trigger is discovered. My son could very well have AE. He fits the description but he's never had an autoimmune work up nor has he had a Neuro work up. This is the very problem and it was discussed on the video. He presented with sudden onset mental illness after flumist. That's the road every doctor went down....mental illness. That was cautioned against on the video. This is what I'd love to scream out at every doctor, stop thinking every person who presents with mental illness is actually mentally ill. Most especially when they were perfectly functioning individuals and suddenly they were not.

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So has anyone done the clock test? DS (almost13), in the midst of a flare this week, drew spokes all over the clock face and numbers on the outside of his "circle." His numbers were unevenly spaced on the right hand side. He also was incorrect when asked to draw "ten after eleven." He's in seventh grade honors classes...

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Oh my gosh, that must be a horrible flare!

 

DD was unable to properly set an analogue clock or tell time using one until last year, several months after she ended abx treatment in April. This school year has been better. She is actually able to grasp geometry now and has no trouble calculating areas of parallelograms and triangles. She used to have HUGE trouble with spatial ability.

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So has anyone done the clock test? DS (almost13), in the midst of a flare this week, drew spokes all over the clock face and numbers on the outside of his "circle." His numbers were unevenly spaced on the right hand side. He also was incorrect when asked to draw "ten after eleven." He's in seventh grade honors classes...

 

 

Our doctor did for my daughter. Her clock had everything jammed on the right.

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