PANDAS/PANS in Italy -- Family needs help

[MomWithOCDSon]

Friends and Comrades-in-Arms --

 

Through another support forum, I've been contacted by a family in Italy (not certain where in Italy at this point, though I have asked the question so will clarify once I get an answer) with a young adult son (age 25). There's a bit of a language barrier, but the father does well with the help of some Google translator ap.

 

This boy-man has official diagnoses as follows: immune-mediated encephalopathy post vacinale
secondary diagnosis pans pandas syndrome. Unfortunately, however, it appears he's having trouble getting effective treatment. His father tells me he has received psych meds and a couple of antibiotics trials, one of which (Augmentin) did not appear to do anything, and the second of which (minocycline) sent the boy into rages. They've tried some supplements, also, but apparently there's been no real progress. No mention of IVIG or PEX, though I've asked those specific questions and, once again, will relay the answers once I have them.

 

I know we have some international participants here, but I don't recall anyone either in or from Italy. Anyone have ideas or caregiver recommendations that I can share with this family? If so, please feel free to post or PM me.

 

Thanks!

[dcmom]

Get them in touch with Dr T- I think he speaks Italian, he may even have a contact in Italy, I am not sure.

 

Also, have they seen the Turkish (I think) study of four adult men with a pandas like illness treated with PEX? Someone on here must have a link.

 

Did I hear at some point that Dr K has connections to Croatia?

Edited April 12, 2014 by dcmom

[Mommy2MCL]

On one of my Facebook pages I thought I read that there was going to be a conference in Italy soon & Dr T would speak. If you are on Facebook boards ask there. If not message me and we can try to figure it out

[pr40]

dr K is, indeed, from Croatia. On this forum, there is one member, croatianmum from croatia. there is one member from Albania, and, if my memory serves me, there might have been someone from Italy.

[MomWithOCDSon]

Okay . . . more info. They cannot travel, this DS is in such bad shape (will not leave his room to go to the bathroom, in fact). This father participates in a local support group (www.pandasitalia.it), and though such connections has been given a prescription for IVIG (he says through email, so I'm led to believe it is from a doctor either here in the states or somewhere abroad), but cannot get an Italian hospital to fulfill the order.

 

I will suggest he try to connect with Dr. T., if he hasn't already. This family sounds relatively well-informed and have a number of supplements in play, have tried antibiotics, etc. But something isn't getting to the root of the problem.

 

Thanks for your ideas and feedback. I've given the dad a link to this forum, also, but I think the real problem at this moment is less a lack of information, and more a lack of care options locally.

[Pandasphilly]

Okay . . . more info. They cannot travel, this DS is in such bad shape (will not leave his room to go to the bathroom, in fact). This father participates in a local support group (www.pandasitalia.it), and though such connections has been given a prescription for IVIG (he says through email, so I'm led to believe it is from a doctor either here in the states or somewhere abroad), but cannot get an Italian hospital to fulfill the order.

 

I will suggest he try to connect with Dr. T., if he hasn't already. This family sounds relatively well-informed and have a number of supplements in play, have tried antibiotics, etc. But something isn't getting to the root of the problem.

 

Thanks for your ideas and feedback. I've given the dad a link to this forum, also, but I think the real problem at this moment is less a lack of information, and more a lack of care options locally.

 

My son was also in a condition where he could not leave his room or travel. We found that Vicodin offered great relief to get him to a treatment facility. I know it is a narcotic but used in small doses when necessary it offered great relief in being able to actually GET to treatment. Perhaps they can consider this? Much more effective than any psych med

[Brese]

try: www.pandasitalia.it