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Help! Desperately need way to hospitalize adult - medical problems from PANDAS


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Hi: I am an adult with PANDAS/PANS and am so sick, malnourished and very low in three vitamins from food restrictions, fear of meds, so not taking any. I need a doctor who will hospitalized me on a regular (non-psychiatric ward) to help me take vitamins, figure out the underlying infections, and treat my immune system problems. Currently, I am so fearful, I cannot get out of bed for the most part. I am, however, will to travel or relocate to a Northeastern city to get help. Please suggest doctors or hospitals who may be able to help me get healthy. THANK YOU!

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I'm sad to see that you have not gotten any suggestions. Even worse, I don't really have any good suggestions myself, partly because I live in Canada where the medical system is quite different.

 

Are you on your own, or do you have any family or friends regularly checking on you?

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I'm sorry I don't have any specific suggestions for you, either, unfortunately. Most PANDAS/PANs specialists of which I am aware are generally booked well into the future and focused almost solely on office visits and/or potentially IVIG in a clinical setting. As for full-on hospitalization, though, I can't say for certain that there are any PANDAS/PANs experts who would oversee that. Based on your description, it seems to me you would benefit best from either a PANDAS/PANS specialist or an integrative/functional medicine professional, but in my experience, few of those are affiliated with hospitals.

 

It sounds as though you are dangerously, medically ill, however, given your eating restrictions, etc. I might suggest that you reach out to either one or both of the larger medical institutions (Stanford Medical in California or Massachusetts General in Boston) and see if they can/will help you. Both of these institutions recognize PANDAS/PANS and have affiliated specialists, but I'm just not clear as to hospitalization.

Edited by MomWithOCDSon
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You and I are in a similar boat. Family family family. You need to have someone who you can take care of you. What has helped me some so far is zinc picolinate ~30mg /day and magnesium chelate. Also taking methylated B complex (Emerald Labs), Vit C and Vit D. But I'm still having issues and trying to figure it out.

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