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Affecting taste and wanting to eat


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Another Weird symptom - does not follow conventional Pandas symptoms( if there is such a thing)

 

My dd has been travelling really well over the past 14 weeks - however whilst she has started talking again - still making this sneezing sound - she has now developed this constant metal taste in her mouth and is constantly feeling nauseous. When she attempts to eat she is salivating excessively.

She has lost alot of weight over the past 4 weeks as she has stopped eating surviving on boiled rice, dry biscuits and water

As usual doctors are treating symptoms not the problem - hence nothing is working

 

Just wondering has anyone heard of something like this before -

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Has she been tested for Anti-NMDA Receptor Encephalitis, and other autoimmune encephalitis? I've read about nausea and drowling/hypersalivating in autoimmune encephalitis. Of course, treatment is the same as for PANDAS, but dr's might be more helpful if they actually know what it is... Also mutism seems to be a specific symptom in some of the encephalitis', but not that common in PANDAS. I have a good scientific report about autoimmune encephalitis, I'm not sure how to share it here though, but if you would pm me your email adress I could email it to you.

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My son had weird sensory/taste/texture issues at one point with his PANDAS and would not eat certain foods. No salivating however.

 

Gunillafromsweden.......encephallitis is simply swelling of the brain. PANDAS is swelling of the brain due to an autoimmune response.....so, PANDAS is just another form of encephalitis

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You asked if anyone has heard of something like this before. Yes, we had somewhat similar issues with our DS8(PANDAS/lyme). From time to time his tastes would change completely and nothing would taste "right" and he would practically stop eating for several weeks at a time. He's on the heavy side of normal so although I worried, I didn't do anything about it. It always resolved itself in a few weeks before he got too thin. This hasn't happened in the last 8 months since starting aggressive lyme treatment. He still complains frequently of nausea, which I usually attribute to the antibiotics he's on. But now that I'm thinking about it, nausea and stomach pain was a frequent symptom before he was ever on any meds, so who knows. He had selective mutism for 8 months, and had vocal tics for 2 years. They're both gone with lyme treatment. His tics were not as severe as your DD's, as I recall you posting about an ongoing sneeze tic that won't go away. He had vocal outbursts (hooting, squealing) when he was stressed - more like Tourette's.

 

I'm glad to hear your DD is talking again! Is she being treated for PANDAS? Is she on any antibiotics? There are several antibiotics that can cause the metallic taste too. I'm thinking of Biaxin (clarithromycin) in particular, but there are others.

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Gunillafromsweden.......encephallitis is simply swelling of the brain. PANDAS is swelling of the brain due to an autoimmune response.....so, PANDAS is just another form of encephalitis

 

I not so sure this is correct, there are several autoimmune encephalitis which are associated with different disorders and symptoms, so even if all encephalitis means the brain swells, they are not the same thing. And even if treatment protocoll is similar in most encephalitis, I think it is a good idea to really pin down what type of encephalitis it is, both because the specific symtoms may "make more sense" in certain types of autoimmune encephalitis, and because if the illnes is not actually associated with strep, you can let go of that "strep paranoia" which many of us with children with strep-related disorder have to live with. As I mentioned elsewhere I have a paper on autoimmune encephalitis with the current up-to-date knowledge, written by a researcher and expert. I can share this with anyone who PM_s me their emailadress. It is a document so I can't post it here, and it's not on the web so I can't link to it.

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