Ozimum

I tend to think lack of focus and concentration is more to do with poor digestion, specifically the incomplete breakdown of protein - my take is based on the Biomed understanding of gluten and casein breaking down to opiode peptides which in turn affect concentration and focus. That's why the GF/CF diet tends to work for those with gut issues. I am a fan of probiotics - antibiotics wipe out good bugs as well as bad, so replenishing good bacteria has to be a good thing. But like antibiotics, different probiotics do different things. Personally I rely on our Biomed doctor and testing to get the balance right... Edit - confounded typos, sorry!

"Ozimum- May I ask what probiotics you use? Thanks." Hi Philamom, My son's stool screen revealed undergrowths of both the anaerobes Lactobaccillus and Bifidobacterium and overgrowths of Clostridium and he was put on probiotic brands made here in Australia. One probiotic has Saccharomyces cereviiae (boulardii) 250mg and contains lactose. (Apparantly the S. Boulardii are more effective using lactose. It feeds on the lactose and also stimulates lactase to break it down. The stuff we use does not contain gluten/casein.) I believe Saccaromyces Boullardii is supposed to help to get rid of yeast but does not colonise itself and I think it kills clostridia and candida. The other probiotic has Lactobacillus rhamnosus, L. casei, L. acidophilus, L. plantarum, L. fermentum, Bifidbacterium lactis, B. breve, B. bifidum, and S. thermophilus. (45 billion CFUs p.capsule) L. rhamnosus is supposed to be an important and aggressive coloniser, wheras S. Boulardii is thought to be a more a long term fix. And the E.coli strain, and enzymes too. Hope that helps...

Hi Zoe, I've sent you a PM but it seems to be blocked? Just wanted to touch base since we're both in Australia...

Hi Tampicc, I suspect every kid is going to have a different gut profile, so I'm thinking it's worth having a stool test done every so often to find out which anaerobes and aerobes are low (or overgrown) and supplement appropriately. (That's what we're doing with our Biomed/DAN! dr.) Hi S&S, There's a researcher here who believes that it's the E-coli in the gut which are responsible for the production of essential amino acids such as tyrosine, tryptophan etc, etc. He's saying that E.coli should be abundant in the gut and when numbers are reduced then other opportunist bacteria (strep, staph, clostridia etc etc) take over and their product is pathogenic, digestion is compromised, and so too the immune system. (Perfect conditions for PANDAS!) We are recolonising our son's gut with an E-coli strain according to our Biomed's protocols, along with a gut healing diet, and supplements including probiotics and enzymes. So far he's doing great... Also, I understand that the strep in some probiotics are a different strain and are 'good' bacteria when in the right balance. So I guess it's a matter of finding the right balance because all bacteria can become 'bad' when overgrown...

Such an interesting question! I've just gone back to the testing we had done for ds17. The blurb that came with his stool screen suggests that overgrowths in Lactobacillus sp and undergrowths of Bifidobacterium sp are possible...so should that affect the sort of probiotic one should take? May not matter if antibiotics wipe out the lot...? Whatever, we discovered ds had a leaky gut just before he had his worst PANDAS exacerbation with strep throat... and things have improved hugely as we've worked on healing his gut with a Biomed doctor, so I am tending to think they are linked in his case. Leaky gut may be part of the picture for some PANDAS cases - my conjecture only. For DS having virtually no E.coli in his gut seems to be key so we've been working on that. So far so good...

The Autism Research Institute website has some advice on how to look for a DAN! practitioner...so you could start there. (They used to have a list of DANs! but I don't think they do currently.) I suggest you ask around in your local Autism community...someone is bound to know of someone good. Keep asking! A good DAN! doctor is real treasure IMHO. My PANDAS ds is being treated by a DAN! dr and I'm not sure what we would have done without him! Good luck!

Hi, A GF/CF diet may seem daunting at first but you can do it. We've gone a long way towards adopting a paleo diet for our whole family, as part of our Biomed's treatment for DS17. And yes, it has helped. We started with supplements according to blood test results - found to be v low in Vit D and low in Zinc. omegas messed up etc. So Vit D, Zinc, Omega 3, iron, Vit C, 2 probiotics, enzymes, magnesium. Along with this we all went GF/CF, and reducing all grains, no potatoes, low sugar/food additives etc, basically meat and veggies! Ds17 is committed to all of this because he knows it's helping him! The typical AS thing of not giving eye contact - that's gone! Focus/concentration is much improved, the spaced out look is gone, posture is improving, pain threshold is back to normal...it's that kind of Aspie thing that's disappearing and I attribute that to the diet. The OCD (mostly contamination), intrusive thoughts, the horrible anxiety, and the drop out moods of abject dispair which would stop as fast as they came on and leave us shell shocked - the PANDAS stuff is going too. Not gone completely, but going. More 1-2 out of 10 rather than 8-9. He's happy. He's back at school. He can hug the dog again. He comes out of his cave and actually talks to me. He can laugh! He's no longer angry with me and the world! I recognise that really nice kid I used to know. I attribute that to the repair of the gut and the strengthening of the immune system which was compromised by the leaky gut. He had virtually no E-coli in his gut which we think is the seat of the problem. (According to a researcher here, the E-coli is supposed to be responsible for the body's ability to make the precursors to amino acids and neurotransmitters.) Instead of E.coli he had overgrowths of staph, strep and clostridia which were wreaking merry havoc. Diet plays a critical part in dealing with this. DS is doing really well and we're not finished treatment - I see the diet as an important part of that treatment. He just had a heavy cold - no worsening of symptoms! He had his wisdom teeth out in January - no worsening of symptoms. So I'm daring to hope! It's the end of summer here...we'll see how he gets through this winter... Good luck!

Poor thing! (actually both of you!) Can't comment on the Benadryl as have never used it but also could also contain different ingredients here in Oz. (I've got an idea that Ibuprofen can have an effect on the gut, but our Biomed didn't seem too worried, especially as we don't use it much.)

I'm with you that this is probably viral...antibiotics are typically prescribed for a bacterial infection, which you would think would be covered off by the Zith - unless it's not a high enough dose? or the bacteria is resistant? With PANDAS we've also changed the way we've dealt with colds etc. Our biomed has said to use Olive Leaf Extract, bump up the Vit C and take echinacea, and (as needed) Ibuprofen, along with hot lemon and honey to help soothe the throat, gargling with salt water, extra pillow at night...and just ride it out. Trust your gut! Good luck! Edit to say- Do you have Vicks vapour rub there? We find it helpful rubbed on chest...

I don't know if this helps...my son's DAN! doctor told us that SSRIs (Selective Serotonin Reuptake Inhibitors or Serotonin Specific Reuptake Inhibitors) are problematic for our kids when there's not enough serotonin for the SSRI to work on - hence the tendency to recommend a very low dose if any at all.

Hi jdude, Our DAN doctor told me recently that he believes ODB (Oppositional Defiant Behaviour) is a feature of PANDAS. At his worst DS also had difficulty with transition - last minute changes and being rushed were meltdown material. At first I thought this was AS but now I'm tending to think it's PANDAS.

I thought maybe very bad gut issues were our problem- ordered a test, and yes, we have some yeast overgrowth (not insane) and NO bacteria/clostrida- have a new anti-fungal, so it's not that. I do have optimistic days, but these loss of control, violence--I don't know-----* When you say there's 'NO bacteria' in the gut, I'm assuming that means there's no strep and staph. What about E.coli? (Which is good to have in the gut.)

We had no idea that ds had leaky gut until he hit crisis point...and he went PANDAS with strep throat. I'm tending to think they're related, at least in his case. Stool screening found that he had virtually no E.coli (should be 70-90%) and an overgrowth of strep, staph and clostridia. A researcher here is saying that E.coli in the gut produces chorismate acid, the precursor to tryptophan, among other things. With that in mind, our Biomed started ds on a protocol to deal with the overgrowth and also to replenish the E.coli, as well as diet and supplements. So far so good! Who knows what set it all off...?! Glad the diet is helping. I'd never have believed it had I not seen it with ds.

It's a tough one, I agree. The challenge is working out why the gut isn't working as well as it should. Hang in there!

"PANDAS depletes the body of tryptophan when stressed." "...personally, I do NOT recommend psycotropic meds, but again, that's my personal opinion, and based on personal experience with my other son (and based on Dr. Murphy's article.)" "...peanuts are full of tryptophan and fat, and I highly suspect that may be why they work so well." Hi tpotter, I find this so very interesting. Our Biomed dr made the comment that SSRIs are problematic for our kids when they don't have enough serotonin for the SSRI to work on. And I understand that tryptophan is the precursor for serotonin (and melatonin). The metabolite and precursor for tryptophan is 5-HTP, an amino acid. I'm rapidly coming to the conclusion that the gut really has a major role...

Big cyber hugs coming your way!

" And this is just teachers- its even worse when doctors, who have the power to help, won't help because they just see a generic autistic thing, and not a child w/ a medical problem." Amen to that!

Hoping you've hit on the answer. I'm rapidly coming to the conclusion that the gut is key. For us it was the overgrowth of opportunist bugs in the absence of E-coli in the gut. It seems that E-coli has a role in the body's ability to produce the precursors to amino acids and neurotransmitters. Makes as much sense to me as anything else...

"After a year of PANDAS treatment, not a sign of AS remains." Hi Airial95 - Whoohoo! We're aiming for that too! (I've been holding onto the thought of returning to our pediatrician with the our much improved son to say "bah humbug!" Mind you, if I never see her again it will be too soon!) "Regarding the autism, an a-little-bit-out-there-but-very-prominent lyme doctor believes 90% of autism is caused by lyme disease. He speaks as if he and another doctor have a bit of a track record of actually curing autism with lyme disease treatments." Hi Micheal...Wow! 90% - that is a really big statement from that doctor! If it was only that simple! Australia does not have any indigenous Lyme. All Lyme cases (very few) found here to date have been contracted overseas. So Australian kids on the spectrum are most unlikely to have Lyme, nor our PANDAS ds - otherwise I would most certainly have turned over that stone! That's not to say that Lyme couldn't be a contributing factor...it's just not the case here. Last week I had coffee with an old school chum who's a doctor and I tried to tell her about PANDAS - she was very closed off. Tried to tell her about Biomed and how well it's worked with ds...didn't want to know. Maybe it just threatened how she sees the world? Can't see us meeting again

Hi SarahJane - I'm coming to similar conclusions. I'm also tending to the idea that PANDAS belongs on a different kind of spectrum, along with other autoimmune conditions such as Lupus, Chronic Fatigue, Rheumatic Fever, Lyme, possibly Parkinson's, and Autism... But on a practical level... My son was officially diagnosed with Asperger's when he turned 16 (sudden onset? Yeah right! We now know it's PANDAS!) That was after being assessed over the years by two audiologists, two speech pathologists, two psychologists and an optometrist and not one of them put him on the spectrum. (We did find auditory processing issues etc.) I totally understand the fear. We debated long and hard about pursuing an official AS 'diagnosis', but decided it would provide him with some accommodations that he needed. We have since got a PANDAS diagnosis. I'm not at all sure that PANDAS would even be recognised by the educational authorities here, so I'm thinking we stick with the AS diagnosis knowing that will get him the accommodations he needs to complete his education. It ain't ideal but it's what we're going with. Edit to say - I'm very sure ds has PANDAS. (And there's no lyme here.)

"Just a thought on this one, dogs do carry/ contract Lymes, Lymes causes autoimmune issues" One less worry for us...there's no evidence of Lyme in Australia. Ticks yes, but not Lyme. There have been cases of Lyme here (including one of our top women tennis players) but it's been contracted while overseas.

This is a question which has also had me thinking for a while...could my dog's skin conditions and my son's PANDAS be somehow connected? Our dog has canine lupus - an autoimmune condition which attacks just the skin around his nose and worsens with sun exposure. It is currently controlled and has been for about 18 months. The dog has also recently had a hot, red rash break out on his paws and legs (happens nearly every summer) - probably an allergic reaction to something he's come in contact with. He's currently on an antibiotic and steroids for that. Meanwhile ds is well (knock on wood!) Everytime this question comes up I review my conclusion that it's probaby a coincidence...but it still makes me wonder!

Hi, An issue for my ds was an inability to focus/concentrate and he had that spaced out look, and was easily overloaded by any distraction. If you haven't tried it, perhaps a GF/CF diet would help? Apologies if you've already gone this route...it's just that it has really helped my ds - I'd never have believed it had I not seen it!

Now that's an idea worth thinking about!

Adding to the wish list...that the supplements didn't cost an arm and a leg! that our food stores sold more 'clean' foods and that our celebrity chefs might take on the challenge of creating dishes and menus encompassing the diets we must do for our kids health and well-being. (Last night I was shocked watching a TV chef use huge amounts of cream to prepare a family meal...No way would that work here!)