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GMT111

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  1. Hello Wombat140, I hope your appointment with Amy went well. We also went out o see her and she has started treatment for my DS 14, I just wanted to let you know that I have been liasing with her coming over to the UK which is likely in Feb/March. We have apporx 27 patients for her to see and thought you might want to see her as well, you at least won't have to go next year. As an aside, can you tell me if you are getting you meds shipped over or is someone in the UK prescribing for you? Many thanks
  2. The previous link I gave you was the PANS diagnostic criteria for PANS only, don't want to over burden you but this is the full web site for PANDAS/PANS https://www.pandasppn.org/ Your daughter really does need anti-biotics I suspect.
  3. Definitely sounds like PANDAS or PANS (or both) you can see the diagnostic criteria here: https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/ you will also discover that tests often come back negative when there are in fact infections. Some other really useful groups are: https://www.facebook.com/groups/P.A.N.D.A.S.International/ https://www.facebook.com/groups/pandasparents/ Don't give up on it, the more you read the better you'll understand, you will get support and if you're in the US will be put in contact with a specialist who understands and can treat. Good Luck and all the
  4. Also I wonder if you call it its re-branded name: Post infectious autoimmune encephalopathy, will remove the paediatric part (assuming your older) as I think PANS/PANDAS tends to limit the group it affects, my apologies if this is unhelpful, i understand your desperation, I would try the private route. I've attached a paper about auto immune encephalopathy, in it, it describes a number of auto immune anti-bodies as well as the offending infections in this condition, it relates to paeds but equally applicable to adults. If you are able to identify with your GP any of the antibodies for the
  5. Hello Wombat 140, is there any possibility that you could get funding via your GP through the independent funding review panel (CCG) to access a private doc to treat PANS. My GP has agreed to make this application on behalf of my son but I also need to find a Paed who will do it. Is someone currently treating you? Have you also put your request out here:https://www.facebook.com/groups/146560548824378/
  6. VVNY Firstly I am by no means an expert, my sons immunoglobulins came back negative, however, I had him tested for specific infections which show both exposure and current infections, I was informed by the Microbiologist that my sons low CD57 count may be indicative of chronic infection and since it has a role in populating B cells, these may not be sufficient to produce the anti-bodies to recognise or fight infection. Essentially, B cells play a significant role in the population of anti-bodies so you may need to ascertain whether he has suppression of B cells.
  7. RONM... Could you provide an update with regard to how your DS treatment continued and how he is doing now. I found your comments calm and reassuring.... We are just embarking on testing at the moment and I would be keen for you to share your experiences now. Many thanks and best wishes.
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