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Anyone know of a PANDAS/PANS specialist in the UK?


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Hi


I suspected my son has PANDAS & showed a paediatrician a PANDAS leaflet. He'd never heard of it & was baffled but he finally agreed to add ASO test to his list of routine blood tests.


1 month later the test results all came back normal. He said that it indicated no recent strep infection & did not want to discuss the PANDAS route anymore. He just said that some children who've had several infections/ ill health take a long time to recover, this would explain the behavioural changes & that tics are quite normal for some children & they usually grow out of them - he wants to discharge us but I've insisted we see him even if its once a year.



I have since found out that just because the ASOt was normal its doesn't rule out PANDAS /PANS.


My sons still has constant tics, anxiety & meltdowns 2years after having scarlet fever.


I'm looking for a PANDAS specialist in the UK who can help him.



thank you :)

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Hi Tiger,

 

I'm posting a link to a 2012 conversation about practitioners in the UK, just in case you haven't seen it. Wombat has been active again recently on this forum.

http://latitudes.org/forums/index.php?showtopic=18047&hl=wombat#entry143554

 

I suspect you will have to do some ringing around until you find someone who sounds like they may be able to help. I think your best bet will be those medical practitioners who have recently trained in the DAN (Defeat Autism Now!) protocols - it's called something else now (MAPS) - see: http://www.medmaps.org/ They have a list of practitioners who've done this training, but I didn't see anyone on the list for the UK, but I do think it's a very abbreviated list. I suggest you contact them and see if they can put you onto someone near you who has done their training. PANDAS/PANS is one of the topics in the training they offer medical practitioners. Good luck!

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Hi Ozimum thanks,

thats really helpful, I've had a read of the thread & have started looking, I was hoping to go with someone called Dr. Daniel Goyal apparently he's

well known for PANDAS treatment but he has stopped practising :(

The quest continues.....

much appreciated xxx

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There was a PANDAS conference in Ireland recently with Irish drsattending, not England but could that be an option

 

Here's the link to the site

 

Pandasireland.ie/conference

 

Perhaps pandas Ireland can point u to drs that attended or may know of drs in england

 

Good luck

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