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As most know, my daughter is really a tough case and we have had no improvement other than GABA calming her a bit. She can't take her eyes off the computer and can't even answer a question because of intrusive thoughts. She she comes away from the computer she can't stop dancing, banging her fists on piano or running into the street at all hours. Nothing has brought her out of this trance except Lysine, but it makes her aggressive too. It has bee 16 long years and tonight after doing a lot of research, something jumped out at me. Herpes Encephalitis. I (her mom) had herpes all the time on my lip growing up. My whole family had it. Lysine is the only thing that brought her out of her trance like state and bouncing off walls. My gut tells me this is it. John Hopkins had a big article on it. Would you start by calling John Hopkins Hospital, or should I call the doctor I am working with to see if he can call over there? Please let me know what you would do???? The stories I am reading are horrible and I am afraid she has had it too long and the brain damage is irreversible. I am so shaken up tonight. Any comments will be appreciated.

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Have you tested for the germ - sorry, I don't remember what the virus test is called, but I think it's one that is routinely tested for, isn't it? Maybe one of the HPVs? I would start with that testing and immune function (IgG, IgA, IgM, IgE and IgG subclasses, etc. etc.) plus any testing relevant to encephalitis (I don't know what those tests are, specifically). I would try not to jump to conclusions until you have a relevant test result.

Edited by jan251
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I am really saddened to hear of your struggles. Life must be extremely difficult and stressful now.

 

Regarding encephaltis, I have been curious about this as well - differentiating encephalitis vs PANDAS/PANS. It appears that treatment is often similar.

 

@Jan Do the Ig numbers from blood tests reflect on likelihood for encephalatis? I thought a lumbar puncture needed to be performed.

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I have only been at this for two years, but I remember your plight from all your posts. I would absolutely do both: ask your current doc to contact Johns Hopkins as well as attempting to making contact yourself. Perhaps a savvy time approach would be warranted, as in I would give your current doc one week to try for contact. If you get no traction that way, start calling and making contact yourself. In my world the form of contact can be phone calls, letters and emails....even combined you don't have to show your inner mama bear panic, but throwing out a wide dragnet with varying platforms in which to make contact seems necessary.

 

I wish you the BEST of luck. Keep us posted.

 

Kristi

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Not wishing to hijack Trinitybella's thread, but if it was herpes encephalitis would you invariably expect cold sores on lip, or could it possibly be that even if you didn't get those?

 

Reason I ask is I don't get cold sores - well, I think I did once, but that's all - but that uncontrollable-running-around thing that Trinitybella mentioned just jumped out at me, because I do that and I've never seen it mentioned anywhere else. Any time I'm out for a walk, if I let my mind wander at all and start thinking about anything else, without thinking at all I start to run flat out, until I have to stop and catch my breath because I've run harder than I can actually handle. My mum and dad both get cold sores from time to time, but I don't. And if lysine is supposed to help, that's one thing that would be dead easy to try.

Edited by Wombat140
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