Ozimum

Were you the one that used mutaflor? did you find that helpful? Yes - Our DAN dr prescribed the Mutaflor protocol, because according to a fecal screen DS had virtually no E.coli - less than 0.1% - whereas it should have been between 70 -90%. It had been replaced by strep and staph - NOT a good thing for gut function and everything flowing from that - the health of his immune system and neurotransmitter production. All we knew was that DS had an occasional bowel upset - we'd been more concerned with PANDAS symptoms! So no wonder he had vit/mineral deficiencies and he caught every cold going around which would turn bacterial! Such a learning curve!

I agree with tpotter regards finding a DAN. I've just done a quick internet search and found lists of DANs/Biomedical doctors on Autism websites, with lists including doctors in Boston eg: http://www.autismtoday.com/clinician-list.html I don't know how old the lists are and there are disclaimers on such lists that you should read. Like everything there are good ones and not so good...I'd be looking for a dr who has kept up to date and continues to attend the practitioner conferences - they're much more likely to know about and even treat PANDAS/PANS. Ring and suss them out. We've had good results with a DAN dr - DS is so much better since we started dealing with gut issues and Vit/mineral deficiencies which impacted on his immune system and neurotransmitter production. I think it's been the combined approaches of supplements, diet, antibiotics, probiotics - everything in concert. It has been slow but steady improvement...no Wow! moments except for when we look back and we see how far he's come! I won't lie to you - it hasn't come cheap, but it's been so worth it! (Otherwise, we'd have sold the house to come knocking on the doors of the PANDAS specialists in the USA!)

Hi Wombat140, On Beth Maloney's 'Saving Sammy' website there is a contact list for providers: http://www.savingsammy.net/providers.php On that list there are three in the UK, with two located in London and a third in Hampshire - not near you unfortunately. However, it may be worth ringing them and seeing if they can recommend someone closer, or maybe one or more of them would be prepared to arrange to do a telephone consultation with you. (You may have to pay an upfront fee - I'm not sure how UK health insurance works.) Beyond that, I suggest you try to find a good naturopath or integrative doctor near you - they would be more likely to understand infection based illness than a GP. A DAN! (Defeat Autism Now!) doctor would also be worth seeking out - you may need to do some Googling to locate one in the UK, but I believe there are some. (You don't need to be on the spectrum to consult a DAN!) Hopefully someone in the UK will respond. Good luck! Let us know how you get on. Edit for typos (- all thumbs!) Also - I've sent you a PM with a list of UK DAN drs I found through a Google Search

Hi Linda, DS18 has been on a gut healing diet now for two years - gluten free, dairy/casein free, low sugar, low grains, no potato - which means we eat meat/fish and veg, and lentils, etc. (DS tolerates soy, but I'm told lots of kids don't.) Because DS loves pasta we allow some GF pasta, and some GF/CF chocolate biscuits to keep him on the diet! At the same time as we started on the diet, we added in a bunch of supplements including zinc, Vit D, magnesium, iron, probiotics, fish oil, and enzymes. He was also on a VERY low dose SSRI for a few months. We didn't see big improvements straight away but we did see slow and steady improvements over many months...it was subtle...bit by bit we would notice some OCD thing had disappeared. Every time we'd think he'd plateaued out, something else disappeared. And he hasn't had a melt down in two years! Antibiotics checked intrusive thoughts each time he began to flare with a strep infection. Tests have revealed improvements in gut flora and vitamin levels. I can't tell you what has done the most good - I think it's everything in concert. Dr Bill Walsh has a theory that A blood types are poor responders but I'm thinking maybe progress is just slow as in the case of DS. We've not seen a PANDAS flare since late last year...we're heading into our strep season now, so fingers crossed!

Hi, So feel for you and your DS. My son and I have a code for when he begins to flare...on a scale of 1-10 and 1/2 to 1 is reasonably normal, if he gets to 2 or 3 we're off asap to our integrative doctor who is our local backup for our busy DAN! dr. Both doctors understand that we need to head off the autoimmune part of this and will prescribe an antibiotic. Thankfully DS manages with one or two courses and he's more or less back to baseline. We now have a presciption at hand at all times just in case. Meanwhile we are pulling out all stops to get him as healthy as we can and have been through the gammut of a gut healing diet and supps - he's doing well, but the real test now is getting through the upcoming strep season here. If I were you I'd be getting the earliest possible appointment with a PANDAS dr, as well as trying to find an integrative dr near you who will help. Be prepared to shop around. I had to change our family dr and actually interviewed the dr we see now to make sure he was on the right wave length. Good luck!

Hi Wombat, ARI used to have a practitioners list until recently. Perhaps you could try contacting them directly - perhaps see if they can put you onto a similar organisation in the UK. Someone in your local Autism community would surely have the lowdown on helpful integrative/biomedical/DAN! doctors - though it may take some ringing around. Just be aware that not everyone in the Autism community is on board with the Biomedical approach. (Personally, our DAN! is my No 1 hero because he helped my son.) As for explaining to doctors...you could try taking copies of one or two documents with you - I suggest Dr Swedo's White Paper - See PANDAS Network - http://pandasnetwork.org/?track=nwsltrdec2010 Don't give up! And do let us know how you get on. Edit: Just wanted to add that there are some UK contacts on the PANDAS Network website - See pull down menu for Resources, then Support Groups.

I have been assuming the fairly mild (compared to video) manifestation in DS was part of the sensory stuff he experienced (noise generally could set him off eg a child's play) and I put it down to being co-morbid with the Aspergers he was diagnosed with shortly after this PANDAS #*%%! broke loose. The PANDAS diagnosis came after. We haven't seen the noise stuff for a while now as DS has been doing well. Food for thought! Thanks for posting this.

Hi Lozsdad, Bigmighty is right on the money. In Oz we don't have a 504 exactly but it is possible to get special provisions such as extra time in tests/exams etc, including use of lap tops etc, depending on the type of issue. A good educational psychologist should be able to do testing for processing issues etc (eg. WISC test.) We've been through this so can recommend one if you are interested.

Hi MMC, Really good questions...I don't have answers but I am prepared to conjecture. We see a DAN! dr who ordered stool testing and we found DS had overgrowths of strep and staph and undergrowths of E-coli in his gut (less than 0.1% where it should be over 70%!) The dr thought it essential that we treated for gut dysbiosis/leaky gut because of the negative impact of gut dysfunction on the immune system and neurotransmitters. I believe the strep normally found in small amounts in the gut is a different strain, but some parents on this forum believe their kids react negatively to strep thermophillus in some probiotics, so I can't help thinking that our kids' immune systems get so scrambled that just about anything will set them off...so why not other strep strains? But I really don't know whether strep A can survive in the gut. I just know that my son is in a whole better place now that we've got the E.coli numbers up in his gut and strep numbers are down. Sorting out vit and mineral deficiencies (zinc, Vit D) and a gut healing diet have also helped.

I've got an idea that sensory stuff can be assisted by the B vitamins...eg Vit B6. Might be worth researching.

Check this article on the ARI website on Anesthesia and ASD - worth a careful read whether or not your child is on the spectrum. http://www.autism.com/index.php/pro_anesthesia

This is short for the Herxheimer Reaction - when there is die off of bacteria etc and the body can't detox quickly enough. Hi kimballot - posted at the same time

Hi, A good DAN! dr (Defeat Autism Now!) should be cognisant of PANDAS. We see a DAN! here in Australia with good results. Integrative doctors are more likely to have heard of PANDAS and a good naturopath might also be able to help. Good luck! Also...do let us know how you get on. I'm sure you guys will not be the last from the UK to look for help here and it would be great if you can pass on info. Edit for typos - all thumbs!

It's important to get zinc levels checked regularly when supplementing with zinc. Our Biomedical dr recommended zinc for DS (now 18) right from the get go and we have his levels checked regularly and he's doing well. I understand from my Biomed reading that zinc is deficient in our soils so most of us are low (along with Vit D). Zinc is supposed to help protect against colds etc, eczema, gut problems, diabetes and is helpful for acne, anorexia, bulimia, chronic fatigue, depression, moods, paranoia etc in teens. Some indicators of low zinc are white spots on fingernails, inability to taste and smell, poor appetite, tendency for wounds to take a long time to heal, eczema... It may also be worth checking zinc levels against copper. Dr Bill Walsh talks about this...can explain alot!

The whole mercury/vaccine issue is so murky, I can understand why people dont want to muddy the waters around PANs. When my son was diagnosed with Aspergers at age 16 (sudden onset yeah right!), I turned to a Biomed doctor (best thing we did) who then diagnosed PANDAS. Needless to say I became an internet junkie and I read lots of things including the debate over vaccines - very little of which I could form an opinion about one way or another. Im still sceptical but also open. I am at a loss to explain why my son was struck down with this PANDAS #@#% and I struggle every day to develop a coherent hypothesis. My son is 18 and fully vaccinated ( and Im not at all sure I would do it the same way again…perhaps Id do single vaccinations and space them out…or maybe Id consider homeopathic alternatives.) Thiomersal was removed from childhood vaccinations in Australia in 2000 (except for HepB), so he got it his early vaccs. But apart from vaccinations its possible to be exposed to mercury in other ways For instance, Ive broken a few mercury thermometers in my time and I also remember delighting in the properties of mercury and actually handling the stuff as a kid in science class (hopefully that wouldnt happen today!) Eating a diet high in fish is also a risk factor for mercury, and so too eating fish downstream from gold mining areas I can tick that box. And Ive heard that its possible for mothers to dump mercury into their kids (thats according to my naturopath Im not sure whether thats in utero or through breast milk or both something to research sometime! I really dont want to add to my guilt just yet!) Last year some researchers here published the following article: Ancestry of pink disease (infantile acrodynia) identified as a risk factor for autism spectrum disorders by Shandley K, and Austin DW. http://www.ncbi.nlm.nih.gov/pubmed/21797771 Shandley and Austin studied a cohort of grandchildren of sufferers of pink disease (caused by exposure to mercury in a teething product) and found that they have a 1 in 22 incidence of Autism compared to the Australian average of 1 in 160, and they argue the results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD. So Im left with a bunch of questions…does exposure to heavy metals like mercury really have the capacity to affect genes in future generations? Is this cohort of grandchildren of sufferers of pink disease proof of epigenetics at work? Does exposure to mercury (or other heavy metals) mean that a gene was turned off or on, making our kids more susceptible to Autism, and messing with how their bodies function? If Autism is indeed infection based as suggested, is it too far a stretch that epigenetics could also have a role in our kids being more sensitive to infections such as strep? I really dunno… I still dont know if my son is on the spectrum or has PANDAS alone. Clearly, I dont have answers, but I will keep asking questions until I die and right now I think it is pertinent to continue to ask questions about mercury.

Just a thought...yesterday I visited the Beth Maloney's PANDAS website via the link that Eamom (I think) posted on a thread by London. I noticed a list of Canadian PANDAS friendly drs there. Might be worth checking out if you haven't already. And those doctors who who take cheap (and really lazy!) swipes at our parenting skills...well karma will have its way with them! How dare they! Grr!

We've had considerable success with a Biomed/DAN!(Defeat Autism Now!) dr who also diagnosed DS with PANDAS. A DAN! dr will check out symptoms and behaviours and test for Vitamin/mineral levels and food sensitivities etc and recommend supps/diet accordingly. Every child is different and it helps to have someone who has an integrative approach who has the knowledge and experience to sort what's going on with your child. Good luck!

Hi and welcome...sorry you find yourself here. There's a current thread by London that you should check out if you haven't already. The link there to the 'Saving Sammy' site would also be worth checking out for a list of UK doctors. The Biomed/DAN!(Defeat Autism Now!) doctors are definately worth trying, and integrative doctors generally are more likely to have some handle on this. You may have to shop around until you find someone who can help. You could also consider doing a phone consult with one of the PANDAS specialists in the USA (See the helpful pinned threads - you'll find lots of good info there!) Over the last few years there have been posters in the UK looking for help here but they don't seem to come back and pass on helpful info - it would be great if you would let us know how you get on. Good luck! - Edit for pesky typos!

Just a thought...a few years ago I had chest pains like that and my doctor referred me to a heart specialist who ordered a bunch of tests and he then told me there was nothing wrong with me! - despite these stabbing pains! They weren't brought on by exercise - I could be sitting or lying down and I'd get them. It was my naturopath who told me I had an infection of the pericardium - the sheath around the heart. He told me an antibiotic would have knocked it over. (I didn't go back to the doctor and chose to stick with my naturopath!)

Hi there and welcome. It's brilliant you are onto this and getting some testing done. I'm thinking that there's a really good chance there's an infection trigger at play here. Good luck! and keep us posted.

Yay! So glad you are getting some answers! Going to a DAN was the best thing we did because the tests revealed stuff we had no clue about. The treatment and diet have seen steady improvement in DS18's health, mood, behaviours, OCD, anxiety, etc, and each time I think he's plateaued out and that we're not going to see any further improvement, something else improves. And his milk sensitivity has dropped away. Yay for a good DAN dr! Edit to say...there are good yeast free alternatives around...start looking through the health food stores. We buy up and freeze and/or stash!

Ash, Sounds like the naturopath might be a DAN! dr. (Defeat Autism Now!) This movement began as parents and doctors discovered that treating gut and immune issues helped autistic kids and they developed a range of treatment protocols which acknowledge that the body is an integrated whole. We see a DAN! dr for my DS who has PANDAS and he's doing really well. You don't have to be on the spectrum to see a DAN!

Hi, Welcome! Just wanted to ditto what Chemar said - check for an infectious trigger such as strep as in PANDAS, or other infections (PITANDS/PANS). I suggest also that you go through the symptoms over on the PANDAS forum (see the helpful pinned threads at the top) and/or the PANDAS Network: http://pandasnetwork.org/ Also - there's a Biomedical email group which covers NZ and OZ and I'm aware there are some Biomed/DAN! trained health practitioners in NZ who are well regarded. They would offer you an integrative approach and could check for infections, immune issues and diet etc. If you would like some names, let me know and I'll dig out their contact details and send you a personal message (PM).

Welcome! Glad you found us. Sounds like your DS is responding to the antibiotic which is a pretty good sign there's an infection involved. The antibiotic can also have an anti-inflammatory effect. It's great that your dr is supportive! I'm in Australia too. I've sent you a PM (private message) - see the top right hand corner of the screen and click on your user name.

Hi, Our DAN! dr is adamant that erythromycin (zithro etc) is more effective because it is a macrolide. Amox just doesn't cut it for DS - it may keep it in check while he's on it, but as soon as he goes off it "whammo!" Here are some links to papers to support you. Good luck! http://cid.oxfordjournals.org/content/43/11/1398.full Reduced Ability of Penicillin to Eradicate Ingested Group A Streptococci from Epithelial Cells: Clinical and Pathogenetic Implications Edward L. Kaplan1a, Gursharan S. Chhatwal2, and Manfred Rohde2 http://www.urmc.rochester.edu/news/story/index.cfm?id=981 Penicillin, Amoxicillin: Step Aside for Strep Throat Treatment Uni of Rochester Medical Centre