CozICan

Hi guys - I’m new on here. My 10yo son was diagnosed with PANDAS 7 months ago. What a whirlwind. I was just wondering if there were any support groups in North Brisbane (Australia) or in the general Brisbane area? Thx Cath 🙂

Hi MissAnna How did u go with finding a North Brisbane (Australia) PANDAS doctor? If you have a good one, can u pls let me know as our 10yo son has PANDAS too & we are struggling too. Would love 2 hear from you if u r still on here. Thx, Cath

Hi guys - I’m in North Brisbane (Australia) & notice that there was some mention from Ozimum about Doctors in Brisbane that understand, accept & treat PANDAS on here a while ago? Can you or someone pls send me the names & contact details for specialists & doctors in North Brisbane? We can’t even find an immunologist that treats PANDAS here (unbelievable hey!) let alone a Paediatric immunologist or other. For those of you overseas, Brisbane is the capital city in our country’s 2nd biggest state! Can’t believe we are so behind & there is so much medical ignorance. I would be so grateful for your responses. Thanks Cath

Hi - I know it’s a while ago that u posted & hope your daughter has received some relief from her PANDAS since then? Anyway, we have a 10yr old son with PANDAS & he’s flared up recently after gastro vomiting bug a month ago. We’ve been using anti-inflammatories (along with Abx - Augmentin Duo) each day since the flare began & it honestly does help. Highly recommended. Apparently the peak flare ups happen 3-4 weeks after the infection (gastro) & that was very true for us. Re atypical Strep - being in the USA you should have access to the “Cunningham’s Panel” a pathology test devised by Dr Cunningham in 2013. It was designed to test for other mechanisms involved in PANDAS other than just simple Strep titers. Sadly we can’t get this panel done in Australia yet. It’s an ongoing battle. Anyway I hope this helps in some way. There is is some recent research about treatments for PANDAS in the Journal of childhood and adolescent Psychopharmacology (Vol 27, Issue 7) that night also help you. I found it on the NIMH website & also PANDASnetwork website. All the best 😞

Hi - I really feel for what you are going through. We are going through a bad flare up with our 10yo son too at the moment & were wondering exactly the same thing (re how long would it be ok to treat with anti-inflammatories?). Thank u so much for posting! You probably already have this info but I came across a journal of child and adolescents psychopharmacology (Volume 27, issue 7) that researched the level of impact that anti-inflammatories have on flare up time. They demonstrated that it can shorten the average 12week flare up period by about 4 weeks by using anti-inflammatories. We’ve been using Advil, but this morning our son’s Dr swapped us to Naproxen 250mg x 2/day as well as continuation of Augmentin Duo 5mls/day. Within an hour of taking the Anti-inflammatories our son went from severe panic attacks & OCD etc.... to normal. Unbelievable! All the best with it all (I’m new on here so I hope this info posts 🙂). Cheers, Cath