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Autoimmune Encephalitis


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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

Yes. My daughter was found to have antiphospholipid syndrome and AE.

No changes on mri.

Tx for ae was changed her life

 

Please go to

Aealliance. Org

 

Watch the video under the clinical tab, the Grand Round video

 

You will get much information on blood markers and diagnosis/tx.

 

Where do you live?

There are at least two places on East coast.

Edited by powpow
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I don't know about "flare," but if you read Susannah Calhanan's book (Brain on Fire), she discusses both 1) the long road of healing she had back to her now "normal" state, and 2) the fact that she still lives in some fear/concern that another infection could trigger the condition again. So "flare"? Maybe. I mean, she was in her 20's when this struck her, so well past the age in which an immature immune system is bombarded by constant infection and viruses in schools, sports teams, etc. Had she been younger at onset, it seems perfectly plausible that she would have been subject to infection-triggered flares of some sort, assuming she wasn't kept in a bubble.

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thanks pow pow. I will watch that --- shoot not today -- GOT to get off this internet!! I am interested to learn more b/c although ds is doing well -- although Saving Sammy was informative and helpful for us, I saw more of him in Brain on Fire than a lot of other pandas stories. -- even though she was a 20-something woman and he was a 4 year old boy -- although he never had seizures.

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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.

Edited by agnes26
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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 time again, PANDAS/PANS is merely the tip of some iceberg or a small part of some huge umbrella. Underlying immune system dysfunction/ susceptibility seems to be at the heart of so many neuro-psychiatric theories. Differences with triggers perhaps - infectious agents (i.e. bacteria, virus, parasite....), and offending antibodies but the process of "some rogue antibodies attacking the brain" is exactly the same.

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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 Susan Callahan. It was our third flare in 6 years. The hospital didn't help, they wouldn't even do blood work for strep.

 

I wonder in the book if the bed bugs had anything to do with it. A friend was talking about a coworker who had gotten "strange" after she had a bed bug incident. She said she is paranoid, wears the same clothes etc.

 

Our Immunologist says the innate immune system is becoming dysfunctional and we no longer can fight infections. These infections keep the immune system so busy it has to store toxins for a later day. The accumulation of toxins wreaks havoc based on our genetics.

 

We have tripled the amount of pesticide in our food supply without further testing. In March they approved even more along with genetically altering the DNA of food. Our bodies see this as something foreign and begins the cytokine cascade.

 

These issues were not as prevalent in the early 70's before glyphospate pesticide and the neonicotinoids pesticide which they believe is responsible for the drastic loss of bees. The neonics are neurotoxins that create confusion in the bees. They are also endocrine disrupters.

I am sure this is another layer compromising our children's health.

 

When in Hawaii at their Volcanos you are warned not to get out of the car if you are elderly or a small child because you can be vulnerable to the toxic gasses. Our elderly are losing their brain function with Alzheimers as rapidly as our kids. I don't think it is a coincidence.

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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 pans doc- previous to ae diagnosis.

 

 

I think they recognize pandas, but they do not treat pandas, if you will. They are looking for (&i am grateful they found! ) lab or clinical evidence of autoimmunity. Pandas tx helped but nothing "held", like you wrote, agnes26.

Thereare clear distinctive levels of severity among kids on this forum. I'm not downplaying any child suffering. But clearly there are some children that are so severely affected there is something else going on. I do believe that pandas is related to this. In fact I have four children affected. the most ssevereis the one who has the AE diagnosis. Another with clear cut pandas better after plasmapheresis and ivig. the other two have been treated with steroids and abx and are better. So, odds are, they are all affected by something similar.

 

As far as triggers for onset or exacerbation, I suppose anything could trigger it. At this point, I am just glad she is getting better and are focusing on that.

I no longer have the patience, time, money or mental energy to search for that needle in a haystack. I am very thankful for where she is now and moving forward with that.

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The AE diagnosis is interesting because the doctor we saw in Texas diagnosied ds with unspecific encephalities not PANS. The first major symptom that my son had after walking pneumonia was a headache and then scalp pain. His symptoms have just gradually progressed with each illness. After each illness, my son's health condition went down just a little further. I have seen the video but have not tried having him draw the clock. He is having more memory problems. My ds is also beginning to realize that things are not as easly as they used to be. I have finally gotten in all of his new testing and will be having a phone conference with this doctor on Saturday. I am curious what he will diagnosis my son with. My son does not meet the criteria for PANS or PANDAS accroding to NIH but has all antibodies in the highly likely catagory on Cunningham Panel.

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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!

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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?

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