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Hi, Finding a dr who will take you seriously really helps. I'm in Australia and the drs here who get PANDAS etc are the DAN! drs (Defeat Autism Now! You don't have to have a child on the spectrum to see a DAN! dr) - I'm thinking it's likely to be the same in the UK. There used to be a DAN practitioners list (including drs in the UK) on the ARI website (Autism Research Institute) but it was recently taken down. It might be worth contacting ARI directly. Otherwise try Googling for a DAN! dr in the UK, though it would help to be able to get a personal recommendation from someone...so maybe consider contacting your local Autism community and asking around if anyone knows a good Biomed/DAN! dr. (Don't be put off - not everyone will be convinced of the worth of a good DAN dr! Ours is a treasure!) Another thought - maybe contact Dr K and see if he's got a contact in London. Otherwise you could try convincing your dr to do a phone consult with one of the 4 PANDAS drs in the USA. In that case I'd be taking a copy of the white paper by Swedo et al (see PANDAS NETWORK) and whatever else you think would help you make your case to your dr. Good luck!

I tend to think diet has a role to play in terms of eliminating or at least reducing those foods which are inflammatory to the gut. If there are gut issues, it make sense that there will be immune issues. Any of the diets will probably help to some extent - we just kept it simple and eliminated those foods to which DS was sensitive (casein - milk protein) and really reduced gluten, sugar, all grains and potatoes. Given that we ate lots of fresh meat, fish and vegetables and far less refined food, we also eliminated alot of food additives. He's even put on weight which says alot about his improved digestion. After 17 months on the diet, he's done so well we've started to challenge him with dairy and he's had no problem so far. I also think sorting out the balance of the good bugs in the gut is also part of the equation. Supplements, probiotics and a good integrative dr all help. Edit just to say, our cleaned up diet has been a life style change and though we will reintroduce those foods, it will be in moderation only.

I'm so glad you feel like you're getting some answers! I'd just like to recommend Dr Ken Bock's book: "Healing the New Childhood Epidemics. Autism, ADHD, Asthma and Allergies. The Groundbreaking Program for the 4-A Disorders." In it he says "We are the Th-2 skewed society," whereas the Th-1 and Th-2 arms of our immune system should be in balance. He argues that the excess activity of Th-2 cells triggers an over active immune response resulting in allergy, and autoimmunity. Allergy triggers inflammation which can in turn trigger asthma if inflammation occurs in the airways. He also argues that kids with ADHD and Autism also tend to be skewed Th-2 (though it can go the other way in Autism.) It's a good read. Sorting out the immune system just makes sense to me. DAN!/Biomed drs like Dr Ken have taken on the idea of treating the whole body with a more integrative approach. We've gone the Biomed route with DS18 and he's doing really well. Sounds like your dr is on this wavelength! Whoohoo!

Hi KelC, This thing is so-o-o frustrating trying to figure out. For us, diet was a part of the puzzle because DS had food sensitivities and gut issues (we had no idea!) A stool test revealed overgrowths of strep and the Mutaflor protocol has worked for us. The GF/CF/etc diet was helpful because it eliminated inflammatory foods and allowed his gut to heal. The diet did not provide any Wow! moments, just slow and steady progress over the last 17 months; though DS did realise he could concentrate better. In addition we rectified Vit and mineral deficiencies (eg zinc), and added in enzymes and probiotics. On top of that we hit every infection hard and fast with an antibiotic as soon as PANDAS symptoms begin to ramp up. (I now always have a script on hand ready to go - it helps to have drs who get it!) So we've been managing it. He just got through a heavy cold without developing PANDAS symptoms - I don't remember the last time that happened! So I'm holding my breath but it is fair to say DS hasn't been this healthy in a long time, and so much happier in himself. I'll take that! The MINDD and Biobalance trained practitioners do know about PANDAS and Biofilms. They are trained by exceptional DAN! drs mostly from the USA. But like everything, there are good ones and not so good...

I'd be thinking middle ear infection?

Hi KelC - so sorry you need to be here again! I don't think Augmentin is a macrolide, where erythromycine (zithro/azith) is. Our dr insists erythromycine is a better choice of antibiotic for DS and it took a bit to convince our GP, but he's now on board. I've just looked up the practitioners list on the MINDD Foundation website and there are a couple of health practitioners in TAS who did the MINDD training in 2011 - they might be worth checking out. (I gotta say my DS is doing really well with a dr here in Melbourne who has done that training.) Otherwise, it might be worth seeing if your dr would consult with Dr Robyn Cosford in Sydney - within Biomed circles she's considered the PANDAS expert in Australia - I know she's booked out for months though. Happy to talk...do you still have my number? Hugs to you.

I feel your pain! Don't you just want to shake some sense into him! Grr! Hoping Dr L sets him straight. Hugs to you.

The interesting thing for me is Dr T's 6th feature of "Leroy Syndrome" - ie. "Minimal or no obsessive-compulsive features or anxiety." Sort of looks like these girls are falling between the cracks of the White paper!

Oh Boy! You've gotta read the Talk section...Yay Buster for taking this on. What a job!

I cook with coconut oil because it doesn't convert to transfatty acids like other oils when heated. That was enough for me!

Trust your instincts on the stomach issues. My son had unexplained bouts of diarrhea and constipation and it was our DAN! dr who diagnosed leaky gut. Tests revealed vitamin and mineral deficiencies (despite a healthy diet!) and a sensitivity to milk (casein) which meant he couldn't digest it. His stool test revealed overgrowths of strep and staph and virtually no E.coli where it should be in abundance. We started on supps, probiotics, and a gut healing diet - steadily eliminating those things known to inflame the gut - milk products (casein),gluten, soy, corn, most grains, and potatoes. We eat plenty of meat, fish and vegetables, pulses, gluten free bread, GF/CF chocolate biscuits etc. DS18 knows it helps and he's doing really well - my skinny teenager has actually put on some weight at last! Whoohoo! So we're not going off the diet any time soon. It's not as hard as you might think.

Unlike T.Mom, I thought Brisbane, California... If you are in Qld, Australia, send me a PM (Top right hand corner of screen) and I'll send contact details for a couple of good DAN drs in Brisbane, Qld who treat PANDAS. Hang in there! People in this Forum will help if they can.

This might be something to check... For years my DS had unexplained bouts of constipation and diarrhea. One of the first things our DAN!/Biomed doctor did was order a stool test which found overgrowths of strep and staph and virtually no E.coli (where there should be heaps!) Good gut health is fundamental to a healthy immune system and neurotransmitter function. DS (now 18) is doing really well. Hope you find answers soon.

Is your son currently on an antibiotic? In my son's case, as soon as symptoms start to ramp up we hit it hard and fast with an antibiotic. We are also working at strengthening his immune system with a DAN! doctor and a naturopath, having found vitamin and mineral deficiencies and leaky gut. We're also doing a gut healing diet to support him. He's doing great. It's important to find a team of medical practitioners who are supportive. Edit for pesky typos...

That's brilliant! You've been such a warrior for your daughter! Well done you for persisting!

Autism Research Institute (ARI) until fairly recently had a list of DAN! (Defeat Autism Now!) trained practitioners on their website. Try contacting the institute and ask for a list of DANs in your state. Good luck! (I love our DAN! I've got my boy back!) Edit for pesky typos.

Bumping this up. I've no answer to your question but I'm hoping someone more knowledgeable might respond. Do you have a sympathetic doctor? If it was me I'd be seeing our naturopath for some testing. Hugs to you.

Did the DAN propose any treatment at all? If not I'd be looking for a new DAN! or integrative dr. Like most things there are good ones and not so good ones... I'd also be trying to get in to see one of the PANDAS drs asap. Hang in there!

You might also check out gut dysbiosis and leaky gut. My PANDAS DS17 has been on a gut healing diet for over 12 months now, along with supplements to strengthen his immune system and he's doing really well. A good integrative dr should know what to do either way.

Also...just a thought...give OLE away from the probiotics (as you would an antibiotic.)

Dr G has had similar training as our Biomed dr and I'm sure he would be helpful if he's available. He's one of the two drs who are recommended in Qld by the Aust Biomed community so I would have some confidence in him, even if he hasn't had experience with PANDAS. He should know the protocols and I bet he would be concerned about any residual infection in that wound given PANDAS. Worth a try! Good luck!

Hiya, So sorry this is happening... sounds like there may be an infection sitting in that wound. What about trying Dr G at Clayfield? Have your tried a GP and describing the physical symptoms? (Some older drs might respond to the fact that you can smell the strep... don't mention PANDAS, just concentrate on infection symptoms.) Otherwise, can you get in to see a Naturopath? My son responds well to Bioeffective A, which is supposed to be an antiviral I think, and Andro NK, both of which I get from an integrative dr. Bumping up the Vit C is also worth doing. As for OLE, it's supposed to be anti bacterial, antiviral and antifungal and could help, though there are no research papers which attest to its efficacy. However, I'm aware that with the Bioscreen stool testing it's not recommended it be used in the 4 weeks leading up to the test, so it must do something! And you could try Ibuprofen/Nurofen for inflammation. Edit to suggest that the flatulence could be a herxheimer's reaction - that is die off of bacteria??? Maybe?

Our DAN! dr suggested we could help our DS with a gut healing diet, which I think of as a modified form of the paleo diet. We knew DS couldn't digest dairy but he was actually ok with gluten, however alot of foods are thought to be inflammatory to the gut such as most grains (including corn), potatoes and dairy, so we've gone a long way to reducing those foods in our diet. DS loves pasta, so to keep him on side we have gluten free pasta which is maize or rice based. We also have a little soy cheese, which DS tolerates. Strictly no dairy. I think of it in terms of what we can eat: meat, fish, vegetables, salads and fruit, which means very little of what we eat has food additives or sugar and I buy organic where I can. I use coconut oil for cooking and olive oil in salads. We also allow some bought gf/cf treats like chocolate muffins, though they tend to be a bit high on sugar. For home made treats I use xyletol or honey. Breakfast means eggs, etc or dinner type meals such as spaghetti bolognese, or salmon bake. I regularly cook up large pots and freeze in portions - easy for DS to heat and eat when he gets the hungries. We started on the basis that we would do it seriously for three months and see what happened. We've been on it now for over 12 months and don't intend to stop any time soon. The outcome for DS is that he can concentrate better and focus. He's healthy and happy and at last my tall, skinny teenager has been putting on some weight - he's now better able to digest what he's eating! Whoohoo! If the gut is functioning better, then so too the immune system and the central nervous system.

So I just looked up the ingredients of a product called Andro NK (Metagenics) recommended by our integrative GP (homeopathic and DAN! training) and found Andrographis paniculata is its main ingredient. It's described as a high potency immune support. We use it in conjunction with Bioeffective A, Echinacea and increased Vit C when DS17 has cold symptoms...seems to help. I'm thinking it reduces the duration of the cold symptoms and the risk of it developing into a bacterial infection.

Hi and welcome! I agree with peglem. Also I wanted to say that we're having good outcomes seeing a DAN! dr and dealing with vit/mineral deficiencies and gut dysbiosis as well as PANDAS. Hang in there!