Ozimum

Just a thought...This might be totally out there but as well as checking out PANS, it might be worth investigating MCAS (Mast Cell Activation Syndrome) Look up the list of symptoms and see if they sound like you. No harm done if it's not. Good luck!

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!

Hi Jane, My message to you comes up as unread and that you have a block on receiving private messages. Hopefully if you unblock messages, it will come through...if not, send me a message to let me know and I'll resend.

Jane - I've sent you a private message - see the top right hand corner of this screen

Hi Jane, I'm in Australia (Melb) too and have found that Biomed trained doctors and medical practitioners know about PANDAS. There are two parent run organisations in Australia who bring doctors mostly from the USA to do regular training in Biomedical protocols with doctors/medical practitioners in Australia - they are MINDD Foundation and Biobalance/Walsh Institute. Check out their websites for more info - don't be too concerned if you don't find PANDAS/PANS mentioned, the more recently trained drs will certainly know about it. Both websites have lists of practitioners by state. Our Biomed dr is my no 1 hero! Good luck!

Found a previous thread on red ears - http://latitudes.org/forums/index.php?showtopic=16025&hl=fenol#entry129051

Just a thought - I believe phenols can cause bright red ears, along with other symptoms. I'm thinking sweet potato may be high in phenols...?

Omega 3 assists in reducing inflammation and helps Th1 lymphocytes defend against infection and viruses. We used an EPA/DHA combo along with other supplements. Fish oil also helps my elderly dog - we're all on it!

Hi Mummadee, So sorry you have had to find yourself here but glad you found us. There is hope! I will send you a private message with some recommendations - I am protective of our doctors because they stick their necks out to help our kids and I don't like to use their names on-line. However, I suggest you have a look at the following Australian websites, which have practitioner lists by state. These are two not-for-profit organisations established by Australian mums who bring experts in from overseas (mostly the USA) to train our medical practitioners in Biomedical protocols, which have developed out of the Defeat Autism Now! (DAN!) movement in the USA. But Autism is not the only condition they treat. We saw a Biomed dr and it was the best thing we did! DS is doing great! Don't be discouraged that neither website mentions PANDAS/PANS by name, recently trained Biomed drs will be well aware of PANDAS/PANS. http://mindd.org/s/archives.php/41-Frontpage.html http://www.biobalance.org.au/

This article has just been published in FASEB Journal - It made heaps of sense to me and explains why Vitamin D and Omega 3 helped DS. "Vitamin D hormone regulates serotonin synthesis. Part 1: relevance for autism" Full article can be found here: http://www.foundmyfitness.com/wp-content/uploads/2014/02/Ames-paper.pdf

We did a gluten free, dairy free, low grains, low sugar, little potato diet to help heal the gut...to reduce inflammation. DS had overgrowths of strep and staph and was VERY low on E coli which should be there. As a result of these overgrowths his gut wasn't absorbing the food he ate and he was skinny. The gut is fundamental for neurotransmitter production. DS did not test as having a sensitivity to gluten, only to dairy products. We changed our diet to support gut healing as one aspect of the treatment we undertook, in order to give DS the best possible outcome. It took several months before seeing a marked improvement. Our doctor said it would take 18 months to really see the benefits and I think he was right. Three years later we still maintain the diet at home, though a little more relaxed and we are still seeing subtle improvements. DS is happy, healthy and very functional. While I still worry about him, it's no longer that gut wrenching panic that it once was. I now have a life! I figured that the diet had to work for DS, so I made sure he had plenty of GF pasta and GF/CF chococate biscuits for a treat - otherwise life wouldn't have been worth living! I allowed small amounts of soy cheese for the same reason (there are many who advocate going soy free too). Also organic where possible and GMO free. I made the diet work for us - lots of meat, fish and veggies, prepared by me at home so I knew what was in his food. I still do it because it's healthy - now we seldom get sick, where before we had lots of colds! And we recover quicker. Before embarking on this kind of diet I think you should know why you are doing it and be prepared to stick to it.

Hi Rowingmom, I agree with LLM. Walsh's book is a slim volume which is a reasonably easy read and an intro to a fairly broad topic. While he doesn't mention PANDAS/PANS, he covers a number of different conditions from Autism to Bipolar to Alzheimers and talks about Epigenetics. After a couple of years on this forum I felt I'd read most of what it covered (thanks to wonderful posters like LLM!) and I'd hoped for more. But at least he published something which can help to work against those closed off minds in the medical world who prescribe all sorts of stuff to our kids but consider suggesting vitamins is akin to voodoo! Meanwhile Dr Walsh is committed to teach those prepared to help our kids and rates pretty well in my book!

Yes, my DS now 19 has done really well with nutrient therapy as a major part of his treatment - along with abx. The way I see it, targetted nutrient therapy got his system working at an optimum level, so he had a greater resistance to colds - and no colds meant less chance of bacteria getting a hold to wreak havoc. Improvement didn't happen over night but slowly and steadily over about 18 months to two years. He's doing great! Medical researcher Dr Bill Walsh has written a book called "Nutrient Power" and has links with the drs at Mensah Medical. They and others come to Australia regularly as part of a program here to train medical practitioners in Biomedical protocols and are very well respected among the biomed community. Seeing a Biomed dr was the best thing we've done! Best wishes!

Hi Shelds, So sorry you've had to deal with this for so long but I do think there's some hope. I'm in Melbourne and found Biomedical practitioners here in Australia are the most likely to have heard of PANS/PANDAS and will treat it, along with other conditions, including OCD. (A biomed dr helped my 19 year old son and he's now my number 1 hero!) I suggest you check out the websites for the following organisations who train health professionals here in biomedical protocols - Biobalance/Walsh Institute and MINDD Foundation. These biomedical protocols came out of the DAN! (Defeat Autism Now!) movement in the USA. (You don't have to be on the autism spectrum to see a Biomedical practitioner...it's just that these drs have been willing to think outside the box and have developed expertise in a number of areas which can be applied to the general population, such as gut disorders which can impact on neurotransmitters.) Both websites list practitioners, though some are better than others and I'm happy to give you a heads up if you drop me a private message. (See top right hand corner of this page and you will find the private messaging service attached to this forum.) I am protective of our doctors because they stick their heads out for our kids and can have a tough time with audits etc, so I don't like to use their names on public forums. You may need to wait for an appointment - the best ones are booked up for months - though you can get started by seeing one of the more experienced naturopaths. For my son, recovery from the OCD took time...it was gradual but it did happen. My son is now happy and functional and the last of the OCD has slowly disappeared. We did everything we could to ensure recovery and that included a GF/CF low sugar, low potato diet (some cut out soy too). We discovered vitamin and mineral deficiencies through blood testing, and fecal screening showed up infections. Treatment has meant that these days he doesn't succumb to colds nearly as often and he now recovers quickly and it's been quite a while since he needed an antibiotic to get control of intrusive thoughts. So yes...I think there's hope!

Yes...Dr C is on both the website practitioner lists - search for WA practitioners and you'll find her. Try biobalance.org.au

Hi Pilbara, Welcome! I'm also in Australia. Hopefully your appointment with the integrated doctor is helpful, but just in case... I just wanted to suggest you check out the websites for the following Aussie Biomed organisations: MINDD Foundation and Biobalance. Both have practitioner lists. These Biomed drs and allied practitioners work with a range of conditions, not only Autism. I'm told that there is a good Biomed dr in Perth - Dr C. (Given your name I am assuming you are in WA!) We see a Biomed dr in Vic who has been wonderful - my DS is happy and functional now after his run in with PANDAS. Feel free to PM me (see the top right hand corner of this page.) Good luck!

Interesting article: "It's not just the Hormones" found here: http://www.guardian.co.uk/science/2005/mar/03/1 My 19 year old told me recently that he's no longer a nasty, bitter teenager...

Hi, We see a Biomed dr for DS who is now 19 and doing really well. We are in Melbourne too. The Biomeds do tend to do quite a bit of testing (best to find a medical dr who can order tests which will be covered by medicare, though not all are! (By the way - not all practitioners with Dr in front of their name are medical doctors.) However, targetted testing is most worthwhile. Ask for copies of the resuts and keep them in a folder. For us, treatment saw slow but steady improvement and life is just peachy for DS right now. So worthwhile!. You can find Biomed practitioner lists by state on the websites for the following organisations - MINDD Foundation and Walsh Institute/Biobalance. These organisations bring medical practitioners to Australia to train our practitioners in biomedical protocols which have evolved from amazing work done in the Autism community. You do not have to be on the spectrum to see a Biomed dr...so much of what they've learned applies to other conditions too. Our Biomed doctor is quite prepared to prescribe antibiotics among his treatments. Contact me by PM if you would like to talk further.

Yes... I've been there too - my naturopath calls it PTSD without the post! I've found it helpful to think about what was the worst that could happen in any situation, just to try and get some perspective. The fact that your ds is currently nice and social...really... I would take that! (Mine wasn't at his worst and we've all seen that!) Take the positives and try not to dwell on the negatives - easier said than done, I know but you will get through this. Hugs!

It's hard to give up what we crave. DS was on board with the diet because he wanted to feel well and our dr seemed to get through to him, plus he gave him a time scale of 18 months - not a quick fix. It probably helped that we found alternatives to the things he loved, such as GF pasta, GF/DF chocolate biscuits and dairy free icecream - still lots of sugar but at least he wasn't getting it from other sources, so we reduced it overall. I felt that a degree of compromise was necessary to keep him on the broad principles of the diet. His blood tests revealed sensitivity to gluten and dairy so that may also have helped convince him, and three months in he recognised that he felt better on the diet and could concentrate and focus better. Being away at college must complicate things...good luck! Spag bol = spaghetti bolognese.

DS at 16 had overgrowths of strep and staph in his gut so we all went on a gut healing diet, which I think of as a modified version of the GAPs diet - I just made it work for DS so he would stay on the diet. (It helped that he was cooperative and compliant!) We eliminated dairy and gluten and reduced grains, including corn, and reduced sugar. We avoided potato as it is said to inflame the gut too. For breakfast he would have a meat meal - homemade spag bol, lasagna (using dairy free cheese and small amounts of GF pasta, and lots of veg grated in) etc. I would make large pots of the stuff (and still do!) and freeze portions so he can just help himself, and I know he's eating ok. I think of his/our diet as consisting of lots of meat, fish and vegetables, lentils, and nuts - it's healthy. Do I think it helped? Yes. It was part of an overall approach recommended by our Biomed dr to help get his gut, immune system and central nervous system healthy again. It took about 18 months to turn it around. DS is now happy, functional and healthy. We are still on alert with colds etc but he's well and so much nicer to live with! We're still on the diet and he's responded ok to recent challenges and testing is back in the normal range. He can actually eat out with his friends. Whoohoo!

A researcher here is saying that glucose increases strep growth in the mouth, so he's recommending no sucrose, no fructose - to remove sugar from the diet, including juice. And that it's important to alkalise. Just thought I would pass it on fyi.

So sorry you are here but glad you've found us. Just wanted to say that if you feel you can't get to any of the PANDAS specialists in the USA, then you might consider seeking out a DAN!/MAPS doctor as they see PANDAS/PANS in Autistic kids and have some idea of how to treat it. You don't have to be on the spectrum to see one of these doctors. I suggest you contact the MAPS website http://www.medmaps.org/contact-us---patient.html You could also check the Saving Sammy website for a list of drs A DAN!/MAPS dr helped DS and he's now my #1 hero! Good luck!

That makes so-o-o much sense! Clever boy! My DS now tells me to "calm down!" Cheeky!

We've been cooking with extra virgin coconut oil for a couple of years now, as we dicovered DS's balance of Omega 3 and 6 was way off. With the advice of a Biomed dietician we stopped using all other oils in cooking because they convert to trans-fatty acids with heat, even olive oil if it's overheated (it's fine raw.) (Though I believe rice bran oil may not convert with heat.) It works fine in baking too. But as with everything, use it in moderation. Trans-fats are in many processed foods so we avoid them too.