Ozimum

Thanks StillHopeful - Dr Russell Dale is a pediatric neurologist in Sydney... and he's proved difficult to see. I think Ashley you're better to try one of the Biomedical doctors in Melbourne (I'm assuming that's where you are, given your post.) As said in previous post, I've sent you a PM and I'm happy to give you the heads up.

Hi Wombat, So glad you've found a doctor! Yay! Would love to hear how you go. DS meanwhile is doing really well.

Hi Ashley, I can recommend the diet and blood tests for vit deficiencies etc if ordered through an experienced Biomedical doctor. I'm not so sold on the brain mapping (too costly for us.) I've sent you a PM (Private Message.)

I've recently been to a seminar which focussed on malabsorption in the gut, so that's what I would be considering. Most doctors have no clue about the gut brain axis and that many neurotransmitters have their origin in the gut. For us, seeing a Biomed dr has been the BEST thing we did for DS. Until then I had no idea he had gut issues!

I agree with Nancy. And I've come to the conclusion that it's likely that no one thing set off this train wreck. Rather it's probably a combination of genetics, and epigenetics, and various assaults on the immune system which set up a perfect storm - it can include everything from vaccinations, antibiotic use by me and in infancy, a diet rich in carbohydrate and sugar, exposure to infection, to toxic load - you name it, it's probably in there. For us going to a Biomed dr (used to be called DAN! drs) has helped enormously to help to put the pieces back together to heal the gut, sort out vitamin deficiencies, etc. And it's been paying off big time for DS19.

Hi Nancy, An article in my local paper alerted me to this study. The article goes on to quote a researcher here in Oz: "We are just starting now to grapple with the bacteria in the gut; it's an impossible soup to analyse...What potential pathogens are in there that might not have been pathogenic to the host but could become pathogenic to the recipient, are really unknown." Talk about the new frontier. I'm betting matching gut type (like blood) will be the next big step. Hope things improve for your daughter.

Latest study on fecal infusion for C.difficile published in New England Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJMoa1205037?query=featured_home

Unfortunately it appears the website page for the list of Sessions and Abstracts at the conference is not currently available. This was the link I used: http://s36.a2zinc.net/clients/aap2013/NCE2013/public/URLRedirect.aspx?role=A Edit to add: AAP is conducting a number of courses across the USA through 2013 and the session called 'PANDAS or PANS: Infection or not' is among them. See link for the catalogue of sessions: http://s36.a2zinc.net/clients/aap2013/NCE2013/public/URLRedirect.aspx?role=A But annoyingly, I've just found that link goes back to the unavailable page. Ok...if you want to find the catalogue I suggest you Google: Pandas or PANS: Infection or not Krilov. That's how I found the catalogue.

I had a bit of time to look around the info for the conference and found the following: Leonard R. Krilov is speaking on: PANDAS or PANS: Infection or not? Leon S. Dure (Uni of Alabama) is doing a session on: Tics, Pandas and other animals. (I think Dure may have worked with Leckman on “A Prospective Longitudinal Study of PANDAS (High-Low study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections. There is no overlap.” and Kurlan on “PANDAS and Strep Infection: Are they linked? (PANDAS-Epi study) This study is an observational study of the possible relationship between Tourette syndrome, OCD and Strep infections.”) (And interestingly... David R. Hill, MD is talking on: “I’ve Been Doing Some Research...” Dealing With Families With Info From the Internet. Hmm. Ya gotta wonder how that will run...!!)

I've lost count of the people I know who have been recently diagnosed with fructose malabsorption (more than ten in a six month period) and it's making the world of difference for them to go on the FODMAPS diet developed by Sue Shepherd. For one friend family dinners became a source of conflict because of his mother's dependence on onion and garlic in her cooking...she could cope with her husband's diabetes but not her son's diet requirement! It was a stark choice for him - either he didn't eat her cooking at all or he did and suffered the consequences. Either way he was in trouble!

Hi Khen, A good place to start is the PANDAS Network website - in particular look for Dr Swedo's White Paper. You should also be able to find further articles on PANDAS on the NIMH website (Nat Inst for Mental Health.) If you haven't already - go through the useful threads right at the top of the PANDAS forum. Also, are there any DAN!/Biomed drs near you? They may have more of a clue. Good luck!

At 12 (BP - Before PANDAS!) my DS was evaluated and found to have weakness in focus and eye alignment skills, and he had underdeveloped right left coordination. These things affect reading eye movements and decoding accuracy and he found it necessary to read slowly in order to process properly. He did Vision Therapy in 6 week blocks when he was 12 and then again at 13 after a re-evaluation. The exercises helped...I did the homework exercises with him every night through the 6 weeks and could see how he developed. I found myself thinking that it must have something to do with brain plasticity. He thought VT helped him alot. I think it did too.

Yay Wombat! So good you've found a dr who is taking this seriously! Whoohoo! I'm doing a happy dance for you! Hope it goes smoothly from here. Keep us updated.

I've sent you a PM with names of Biomed drs in Qld. Hang in there.

Hmmm... Copper and zinc are supposed to balance each other, so my question is - what's happening with zinc? It seems to be far more common to have high copper and low zinc and that causes problems - Dr Bill Walsh has been studying this for many years.

Hi Norcalmom, Dr Bill Walsh has done so much to advance treatments in Biomedicine. Every year he helps train Biomed practitioners here and he's thought of very highly by practitioners and parents alike. Our DAN! trained dr is my #1 hero! DS18 is doing so much better!

Does the pain occur with exertion or at rest or both? My GP referred me to a heart specialist for the chest pain I experienced irregardless of exercise and he found nothing wrong!? It was my naturopath who found an infection of the pericardium - the sheath around the heart...so two doctors missed it! He said an antibiotic would have treated it, though by that stage I was happy to go with the naturopath's treatment considering he had more of a clue! Here's hoping you get some answers, but maybe keep in the back of your mind that infection can sometimes be a cause.

Thanks for posting this. So interesting.

Yes...we've had some good success by going to a DAN!/Biomedical dr and getting testing done which showed up Vit D and Zinc deficiencies - significant for immune function. Testing also revealed DS had gut issues, so we all went on a gut healing diet to support him and he was put on a number of Vit supplements and probiotics etc. No "wow" moments, just slow and steady improvement over the past two years. The gut, the immune system and neurotransmitters are all linked, so healing the gut was fundamental. DS is so much better and healthier...he catches far fewer colds which he now sheds quickly and the last couple have not turned bacterial so he hasn't needed antibiotics this year!!! Yay! Have a look at Dr Ken Bock's book: "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies" It's a few years old now and I know he'd like to update it, but it's still a very good read. Edit for pesky typos...

A TV program here just ran a segment on two doctors treating MS as infection based (Chlamydophila (Chlamydia) pneumoniae) and treating with long term antibiotics. I couldn't help seeing some parallels. http://www.abc.net.au/catalyst/stories/3572695.htm The following website is for one of the doctors whose wife has MS and who appears to have responded to antibiotic treatment: http://www.davidwheldon.co.uk/ms-treatment1.html These sort of developments are incredibly exciting but research funding isn't exactly forthcoming. I know what I'd do with a lottery win!

From my quick internet search, Dr R appears to treat Tourette's. Whether he is open to considering PANDAS is another question. I guess you'll only know if you speak with him about it. Here's hoping he's PANDAS friendly and you get the answers you're seeking! Edit to add...I just found a webpage on a 2010 Tourette's conference where Dr R spoke...PANDAS was definately on the table at that conference, so that's looking hopeful. Check it out at: http://www.tourettes-action.org.uk/display/ShowJournal?moduleId=3813883&registeredAuthorId=326208&currentPage=3

Tony Attwood is considered a world expert on Asperger's. Try his website: http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=62&Itemid=176

Hi Theresa, So glad to hear your dd is improving. And, having a copper imbalance is not kooky at all! Dr William (Bill) Walsh is a medical researcher who has been looking at copper/zinc ratios for something like 30 years. Have a look at this site and scroll down to watch the video on copper/zinc http://www.walshinstitute.org/Video.asp He is one of the original DAN! drs and does alot to educate medical practitioners across the world in the advances in biomedicine. A DAN dr would have tested your daughter's zinc and copper levels. (If copper was high, it's likely zinc was low.)

"... he seems to take the view that PANDAS should generally be treated the same as any other OCD or TS, so that might be as well to know for anyone else looking for a doctor. At least he's prepared to believe it exists, though!" Your comment made me look him up on the internet...he's a psychiatrist I think...I'm not sure I would be confident that he's thinking along the lines of infection based illness in these conditions. It's interesting that Beth Maloney has him listed on her website, so hopefully he's on board... I look forward to hearing how you get on with the Dr in Birmingham too. Best of luck!

This document has been around for a while and appears to quote some dated (and conservative?) NIMH documents - You will find more up to date documents here: http://www.nimh.nih.gov/index.shtml For example: http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml Do check out Pandas Network: http://pandasnetwork.org/?track=nwsltrdec2010 - Dr Swedo's article is a good one to take to drs.