Reply to 18 y.o. DD's mysterious brain ailment, advice please

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[quote=Anonymous][quote=Anonymous][quote=Anonymous]What you are describing sounds a lot like autoimmune encephalitis, which is basically when a person's immune system attacks the brain. Symptoms usually begin after an illness of some kind. It can come on quickly and dramatically (changes in behavior, seizures, hallucinations) or take months or even years to progress. It's only been recently "discovered" so most doctors know very little about it. Go here for more info:

https://aealliance.org

And here for doctors in your area.
https://aealliance.org/clinicians/

It needs to be treated quickly (usually high dose steroids are first line treatment). The sooner you start treatment, the better the outcomes. [/quote]

OP here.
No, DDs symptoms sound nothing like the symptoms described in that link you posted.

But, what's similar, I think, is that something, a virus or some other infection, attacked her brain.

The infectious disease specialist told us we'd never know what attacked her brain. And her symptoms are very subtle. She appears totally normal. DH and I are the only ones who notice that something's different about DD.

I am wondering whether steroids might help DD??

A friend had a mysterious ailment that landed him in the hospital with severe symptoms (confusion, difficulty walking). His doctors thought it was meningitis, but tests were negative. They finally gave him steroids, and he recovered. His doctors still don't know what caused his illness.

I wonder if DD had a milder version of something like that?? [/quote]

A good friend had a brain illness that everybody thought was a mental breakdown. At his wit's end, he finally had a spinal tap and found that it was West Nile. Your daughter probably doesn't have West Nile, but stumped doctors have a tendency to give up on people and to blame the patient --if you feel in your gut that this is something external impacting your kid, please keep looking. 
Also, my own husband has been horribly sick with Lyme for two years. Doctors will tell you that 6 weeks of antibiotics does the trick, but if someone is diagnosed long after the fact he or she may need antibiotics for YEARS. Doctors don't understand Lyme disease either, sadly. One way to tell is if your kid has a physical reaction to the antibiotics -- my husband felt like he was having a heart attack from them, so he stopped for a while, but it was actually the medicine working and nobody told him it would feel like that. He also has strong reactions to garlic, oregano and vitamin c. You could harmlessly experiment with those, crazy as it sounds. I'm sorry you are going through this.[/quote]

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