SSS

Ditto Rowing Mom's story times 3 children.
 
Gestational Lyme, Bartonella, Babesia, 1child 'FL 1953', mold, viruses, etc for all our children. One considered ASD, one considered Aspergers, one sudden on-set of PANS at 5. The twins regressed after MMR at 18 months. Older son regressed after MMR at 5, a strep related illness and exposure to virus in three week period.... suddenly a different child.
 
All of them 'almost' fully recovered. No OCD, no ASD/Asperger's diagnoses, etc. 4 years of treatment. We are still detoxing mold for all three (one almost done) and trying normalize IgG levels in one child with monthly LD IVIG.
 
Interestingly the child that has always done the best with treatment had IVIG for Kawasaki's diagnoses just prior to MMR vaccine. We just had our first soccer game last week and we are thrilled older son was able to keep up on the field with his peers (he had stamina issues probably from mold). Huge difference year, over year in their recovery process.

We have a success story:
 
In our case, our 13 year old daughter's lyme/bartonella infections were the cause of her PANS/PANDAS symptoms. The Tourette's and minor OCD symptoms were mostly the result of die-off toxins produced by bartonella, and we saw flares in these symptoms with abx treatment. For her, toxin build-up (especially bartonella toxins and yeast/mold toxins) lead to motor/vocal ticcing. Detoxing (oral magnesium citrate, Epsom salt baths, frequent lemon juice/stevia in water, soluble fiber supplementation, vitamin c to bowel tolerance), and the use of anti-inflammatories (Japanese knotweed, curcumin) decreased the flares.

We have found most of the improvement in her Asperger's symptoms (behavioural regression, cognitive/executive function impairment) resulted from herbal treatment for protozoan infection, although she tested negative for the babesias through Igenex. I initially observed a good response to malarone, but the response to Buhner’s herbal combination for babesia (cryptolepis/sida/alchornea) has been far more impressive.

Our pediatric psychologist had initially diagnosed our daughter with Tourette's, Aspergers, ADHD, motor delay and then PANDAS (Pediatric Autoimmune Neurological Disease Associated with Strep) because her symptoms would escalate during strep infections, while our LLMD diagnosed her with PANS (Pediatric Autoimmune Neurological Syndrome) which is essentially the same symptomology but is caused by other types of infection, in our case bartonella.
 
There is a long list of symptoms associated with PANS/PANDAS and our daughter had every one of them. More information can be found here:

http://pandasnetwork.org/pans/

We never did do the PEX (plasma exchange) or IVIG (intravenous immunoglobulin) treatments suggested on the above site. We are Canadian and IVIG is not available here except for severely compromised individuals, and our daughter was still functioning well enough to attend school (although with an IEP and EA and many considerations). We did not have the money to attempt treatment out-of-pocket in the US (other than with abx prescribed by a LLMD).

Fortunately our LLMD was a good one who assured me that the PANS symptoms would resolve with treatment and they have. They have actually improved considerably more with herbal treatments then they did with abx.

A recent trip back to the pediatric psychologist was a great one. She was flabbergasted that her previous diagnoses of Asperger's, Tourette's and motor delay were no longer applicable.

We remain on the low-dose herbal protocols for bartonella and babesia and I am still trying to increase herbal dosages to address protozoa.

Bartonella is a very common cause of neurological/psychological symptoms, and although most doctors don't realize this fact many veterinarians do.

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

After everything we have been though I feel that symptomatic disease has little to do with the presence of infective organisms and much more to do with the competence of the immune system which is impacted greatly by toxin load (pesticides, heavy metal vaccination adjuvants), and the body's ability to excrete those toxins.

http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx

http://www.ageofautism.com/2014/04/pesticides-and-the-age-of-polio.html

http://www.mdpi.com/1099-4300/15/4/1416

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

We are being poisoned by pesticides and the ever increasing amounts of glyphosate poured onto GMO foods. Pesticides preferentially destroy good gut bacteria resulting in overgrowth of pathogenic species and the development of leaky gut. This allows foreign proteins to escape into the blood stream, resulting in autoimmune and allergic conditions.
 
Our children are being impacted by the adjuvants in the 70+ vaccinations now required.
 
Something has to give and it is our immune competence and our health.

We try to eat non-GMO and organic as much as possible (conventional grains and legumes are sprayed both during growth to address pests and before harvest to facilitate desiccation - if it doesn't say ORGANIC it isn't), and I have taken out vaccination exemptions for both of our children (our 18 year old is neurotypical and asymptomatic). We use wired phones and computers to further decrease electrical stressors; after all, our nervous systems and hearts function through changes in electrical potential.


DD's timeline and more specific symptomology is listed in my signature.

Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs.
 
As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences.
 
My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12.
 
At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily.
 
When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention.
 
DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it.
 
He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time.
 
I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!

We pay for our healthcare in this country (US).
 
My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
 
we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
80%! Last year it was 90%, now 80%.
 
Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
She has PANDAS. I can't help you.
 
He billed our insurance company I don't know what, but I got my 20% bill for around $80.
So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
Can't help, bye-bye.
 
So you see Pik, welcome to American healthcare 2014.
It is what it is.

This is a good article on explaining the biotoxin pathway and why mold toxins cause more trouble for some than others http://www.survivingmold.com/diagnosis/the-biotoxin-pathway and this one http://betterhealthguy.com/images/stories/PDF/Townsend_Mold_Mycotoxins_Overlooked_July_2014.pdf
 
If your child is sensitive to mold toxins and has trouble clearing the toxins, then the focus is on both removing the source of the mold AND removing the toxins from the body. Apparently, mold toxins can stay in some bodies even after the source is gone and will circulate around until you help it clear. To do that, I've come across three strategies.
 
One is to take things that help the liver work more effectively - supplements like milk thistle can help upregulate certain liver enzymes/pathways provided you aren't allergic to ragweed (milk thistle is in the ragweed family) or aren't sensitive to supplements high is sulfur. Water and lots of fluids also help detox via the kidneys.
 
The second one is to ingest binders - things that bind to toxins within the intestines and are excreted rather than letting those toxins get reabsorbed thru a leaky gut back into the blood stream. Binders include activated charcoal (1-5 capsules/day taken away from all medications and supplements), chlorella (10 capsules/3 times per day away from meds), psyllium husk, and cholestyramine - a cholesterol-lowering drug that binds to bile during digestion and also binds to toxins in the process. The first 3 are OTC and cholestyramine is a prescription.
 
Third, you can take supplements that increase the body's production of glutathione - a major antioxidant. These include alpha lipoic acid, vitamin C and n-acetylcysteine (NAC). But if you are sulfur-intolerant, alpha lipoic acid and NAC should be avoided (sulfur intolerance can be determined thru experience or by genetic testing thru 23andMe).
 
Finally, in addition to detox, you can also focus on reducing inflammation. Motrin 3x/day, resveratrol (an OTC supplement), curcumin (great for some kids, not tolerated by others) and some other herbs. Epsom salt baths help some people as well. And of course, time. Support the body, remove the insult, and give the body time to heal.

We tried the Klinghart Cocktail for treatment of Chronic Lyme in our 16 year old son. After three months we didn't see any improvement. We were told that it could take up to eighteen months for the cocktail to show any benefit. Unfortunately, we didn't have that much time as he will be off to college soon! This cocktail is extremely expensive, very involved and tastes horrible. We would have been OK with all of that but we didn't have the time to mess around. We went the antibiotic route and my son is as good as new. Of course I would have preferred to treat the Lyme naturally but for our family this was a case where antibiotics were justified. Good luck!

We have been using Buhner's full bartonella protocol since Apr 2013 after discontinuing 2 years of abx treatment for bartonella. Here is a link to the protocol, but I really would suggest buying his book on the Mycoplasma and Bartonella coinfections:
 
http://buhnerhealinglyme.com/
 
BARTONELLA
Research is ongoing, this is the most up to date protocol:
• Sida acuta tincture (from Woodland Essence or julie@gaianstudies.org) ¼ tsp 3x day for 30 days
• Hawthorn tincture, same
• Japanese knotweed, (tincture, same dose (from same sources as Sida acuta, above), or capsules from Green Dragon Botanicals 2 capsules 3x daily)
• EGCG 400mg +- daily
• Houttuynia (Yu Xing Cao – 1st Chinese Herbs, powder – use “LYME” code at checkout for 10% off) 1 tbl daily
• L-arginine 5000 mg daily in divided doses
• Milk Thistle seed, standardized, 1200 mg daily
All for 30 days.
PLEASE NOTE: If you have active herpes, chicken pox, or shingles DO NOT USE L-arginine. see also: bartonella
 
We are not using l-arginine, as I think many of our kids are also dealing with viral infections.
 
After 7 months of this I added the combination tincture cryptolepis/sida/alchornea from WoodLandEssence. This produced a significant babesia herx which included chest pressure/air hunger and sighing. So now I know we are also dealing with a babesia-like-organism (protozoa) as well.
 
The doses DD is taking are lower than those outlined in the above protocol, but Buhner's associate said that as long as DD remains on the protocol for 1-2 years she will eventually eliminate the infections.
 
The effects of these herbs is real. They differ from antibiotics in that they contain multiple constituents, not single ones like abx (which the bacteria are quick to become resistant to).
 
DD is maintaining 98% improvement with no flares (just the odd herx from changing herb dosages) and has for the last 9 months.
 

This was posted on another forum and I thought it relevant to our story, and perhaps to those of others here.
 
DD's major downturns have both coincided with MMR vaccinations.
 
http://sanevax.org/gardasil-decision-will-always-regret/
 
Thanks "surprise"!

Wow. Thanks for the link and the story. I will never again blithely consent to vaccines for my DS or myself. I made that decision several years ago, but it becomes further enforced and validated by stories such as this. I continue to be appalled at the medical community that turns its collective back on this sort of experiential evidence, "clinical trials" be damned. It's absolutely maddening.

Hi everyone. I haven't been on here in awhile, and a funny thing happened. I was just thinking today, that I should do a followup (it's been about a year), and then someone just happened to PM me from this group, so I said to myself: "why not do it now?" So, here it is.
 
We are doing extremely well...not 100% as proven by a simultaneous herx between our dog, both my sons, and myself this evening...but the herx is over, we survived (2 of us were raging, but we were all aware, and took some things to calm us down.)
 
My 21 year old is a senior this year in Aerospace Engineering, and my 18 year old is entering as a freshman at a really good university in Video Game Design and Production (he has several years experience doing that at the high school level...much harder to do than what people would think). Lots of 3D animation. But, he loves it.
 
OK...what are we doing. Well, here goes. As other's before me have posted, we are doing homeopathy (and we have also done a few sessions of medical hypnosis for "stuck" behaviors. Made a HUGE diference, and my boys are so happy.
 
We are now completely off abx, and most supplements. No more IVIG, no more PEX, honestly...haven't seen the regular doctor for anything but physicals for almost the past year. I take nothing else, besides the homeopathy. My 18 yo (who got sick when he was 8) still takes his seizure meds (although we went to an epileptologist the other day to talk to her about starting to wean down, as we really believe, as did several neurologists, that it was related to infection. He also still take 1 supplement...5-HTP, because when I stop giving it to him (without his knowledge), he gets very depressed almost instantly.
 
We use a homeopath by skype, and it is way, way less expensive than all the IVIG's, PEX, abx, supplements, etc. that we did prior.
 
We did 1 PEX, and 7 IVIG's, plus multiple years of abx, but although we'd have great results, they were never permanent...the kids would always be good just until the next one, and of course, insurance wouldn't keep doing it. We had to try something else.
 
We are still doing homeopathy, and in fact, we had almost simultaneous herxes this evening...but nothing like it used to be (and my son and I got quite ragey, and his eyes even dilated for awhile.)
 
My 21 year old (I suspect he was congenital...dx with Asperger's, but way better since we found the correlation with infection) did some Ayurveda last year to fix his gut (he had c-diff...don't know how long), but he just couldn't stick to the diet. He started homeopathy this summer. Even my dog is now doing homeopathy (he has seizures, and several other things.)
 
We also decided to try some medical hypnosis, and it has done wonders in just 2 - 3 short sessions with stuck food related OCD, and several other OCD behaviors. I am very, very happy with what happened. So far, only my boys have done that, but I am having some issues with depression (I suspect mostly from PTSD), and I am going to try it myself next month.
 
We were/are battling lyme, bartonella, babesia, erlichiosis, strep, mycoP, and on and on and on. My 21 year old even had his aortic valve replaced last summer...emergency. Although he had a congenital defect, I believe it was worsened to the point of emergency open heart surgery to replace it, because of the bartonella, that he turned out to 100% have. So, for us, the infections have taken a huge toll.
 
But, continuing with something that just wasn't holding didn't make sense.
 
Homeopathy treats the whole body...from the cellular level up. As I said, it has not been easy at times...our homeopath warned us that it could get rough at times, and that she fully expected it to (or she would have had to do something different to make sure that she really got to the issues.) But, for us, I truly feel that we have our lives back. I feel like my 18 year old and I are now at about 90%, and my 21 yo is about 80 - 90%. He even suddenly decided this weekend to completely overhaul his wardrobe (so much more mature...truly looks rugged, and so very handsome, rather than like a 17 yo.) It came out of nowhere...just all his healing.
 
I know that I would never have considered anything as "crazy" as homeopathy several years ago, because I really didn't understand it. But, I would have saved more than enough to have paid for my kids entire 4 years of college, and then some, and we would have been much further along with our healing. But, we are doing great, and I can't recommend homeopathy enough. There are lots of different kinds of homeopathy. And, many others who have decided to try it, have also been quite happy. Ours is very customized, but I know others who do classical, and other types, and they are quite happy, too.
 
So, there is my followup for you.

Oh, its from any sun exposure. Five minutes into a car ride, my hands would be tingly and feeling like they were burning. I am certain your kids are not in a dark room 24/7. The tip of my nose turned red like Rudolph and lasted until a few weeks into minocycline. It was really embarrassing. No amount of concealer would cover it all up.

Doxy does things to the skin especially skin exposed to the sun. My nose and the backs of my hands were tingling/burning. It stopped when I went on minocycline for the summer. Doxy is notorious for making you VERY sun sensitive.

We had an excellent experience with a low dose compounded version of it from Hopkinson pharmacy. In one week it took away my daughters arthritis pain that had lasted a year and a half, before which nothing had worked

Here are 2 posts regarding homeschool. I do homeschool my PANS daughter. It has made an amazing difference because she isn't tired all the time, not exposed to all those germs, and not exposed to all the stress. The past two years has shown amazing improvement. My husband was against homeschool at first. I kept saying to him "This is her life," and her life sucked at the time. The counselor at school thought homeschool was a great idea too. She said, "This is your daughter's mental health we're talking about." She knew that my DD was not getting the help she needed in school. My husband will tell you that homeschooling her was THE BEST decision we have made in helping her to recover. He is a total believer now. She is symptom free about 70% of the time and her flares are much milder than before. Good luck!
 
http://latitudes.org/forums/index.php?showtopic=22591&hl=homeschool#entry173745
 
http://latitudes.org/forums/index.php?showtopic=22102&hl=homeschool&page=2

It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.

FWIW, at 7 months into lyme treatment (and 2.5 yrs on single abx for Pandas), DS was only at 75% baseline. But that was an improvement from the time we'd started (maybe 60% baseline). So with all you've done I too would be looking for signs you were on the right track but also realizing it's a very long haul. It took us 2.5 yrs of combo abx to be at a point we could stop abx altogether.
 
Are you pulsing tindamax? If it's one you're still using, maybe take a holiday. Tindamax was brutal for DS and after only 5 weekends at 1/2 dose, he was in a constant herx that brought tics back in force. We stopped the tindamax and it was like the sun coming out after a hurricane. Cefdinir also produced a strong herx, as it crosses the BBB - lots of emotional outbursts. So consider rotating, pulsing or taking a break from one or more abx for a bit.
 
I agree with your LLMD that mold can be a giant money suck and testing is ambiguous. But I found the blood work that Shoemaker lists somewhat helpful http://www.survivingmold.com/diagnosis/lab-tests - we didn't do all of them. Our LLMD did the ones he felt were most helpful regarding inflammation.
 
In terms of environmental testing, we didn't have the budget for a $400 ermi test that wasn't going to tell us specifically where a problem might be. So my cheap way of getting peace of mind was this: I bought $10 mold test kits for the bedrooms, the game room, and the basement. Instead of doing a settle test for an hour as suggested on the directions, I left the plate exposed for 24 hrs. - one major fault of the settle plate testing is that it may not capture lighter mold spores that hang in the air, so an hour exposure will bias your results toward molds that are heavier. So a 24 hr exposure gets you a somewhat better sample. I then sent the plates that grew stuff to the lab for species identification. My reports came back with 3 species, all of which are ubiquitous outdoors. I was at least able to feel a little reassured that there were no "bad" species like aspergillus in the air and my husband was able to talk me out of taking a sledgehammer to the sheetrock in some irrational fear there was horrible stuff growing behind the walls. Now I realize this is far from a fault-free plan. But it fit into my $100 budget and gave me a little peace of mind. I also know that DS's tics come and go, making it less likely he's in a chronically sick building, which helped me give the settle plates a little more validity.
 
DS has shown inflammation on the Shoemaker markers from time to time. So our plan is to use cholestryamine the same way you might use a steroid-burst. For a brief time, to try to lower symptoms that way you'd use an antihistamine to alleviate allergy symptoms. Haven't had to pull the trigger on that one yet. But maybe talk to your LLMD about blood work and possible short term mold treatments - if you feel that herxing isn't more of a cause for the tics. Inflammation and poor detox have always been behind DS's tics when they crop up.
 
Finally - only my personal opinion - but IVIG caused a huge herx for DS and in the short-term, did much more harm than good. Some have had better results, so there's no universal answer. But just know there's a downside. Post-IVIG was by far the worst 10 weeks of our 5 year journey. Make sure you've explored other options and be comfortable with IVIG - don't do it because you think you "should". Do it because it makes sense for your individual situation and budget.
 
Hang in there....

Well, I'm not a Dr. (of course) but when I presented PANDAS to our then DAN/MAPS Dr.
(I had pages of written summary with our history about why I thought my dd, then 4-5 yrs. old, had PANDAS. Basically, she had all the symptoms, except overnight transformation, but yes waxing and waning.)
I used this web page for symptom list:
http://webpediatrics.com/pandas.html
 
Anyway, that Dr. did know about PANDAS (and really, any DAN/MAPS Dr. should) and we did a trial of 1 month Azithromycin (full dose 6 days a week) and daily ibuprofen, with me taking copious notes, report back in 4 weeks.
Absolutely we saw a turn around, it was amazing, with K teacher commenting to boot.
 
I don't think your regular Dr. is going to prescribe PANDAS dose antibiotics in duration.
Perhaps write up like I did your case for PANDAS, what you want, and approach your current DAN/biomedical Dr. you are paying for--

I remember reading somewhere that Lyme suppresses the immune system, in some more than others. You could have Lyme but not have any antibodies show up on the test b/c their production is being suppressed. And it is only after antibiotics that the tests come back positive, like the body was given some help and THEN the immune response could be mounted. Does that make sense? Still on my first cup of coffee here.

My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems to be working for that. With the Lyme under control I think the PANDAS is on its way out. This has been a long road, and I don't know if we are at the end of it or not, but it looks like we are at least seeing the light at the end of the tunnel!! Never give up. You never know what is around the next corner.

Could it be a Lyme/bartonella reproductive cycle? Just a thought! How long since behaviors before this? You said she's been off abx? so maybe it was your guests exposing her to something too. Hopefully things have settled down since yesterday! My dd just had a "folate flare" that lasted the better part of a day.... Wow, I didn't enjoy that one bit I tell you!

Good luck with your new appt. next week!

Instead of trying to manage this yourself, why don't you go to a PANS/PANDAS doctor? Remember a PANS child will not necessarily test positive for strep. My DD never has.
 
Here is a link to a thread from this forum of recommended doctors:
 
http://latitudes.org/forums/index.php?showtopic=5023
 
Here is a link to PANDAS Network's list:
 
http://pandasnetwork.org/resources/providers/provider-list/

We pay for our healthcare in this country (US).
 
My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
 
we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
80%! Last year it was 90%, now 80%.
 
Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
She has PANDAS. I can't help you.
 
He billed our insurance company I don't know what, but I got my 20% bill for around $80.
So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
Can't help, bye-bye.
 
So you see Pik, welcome to American healthcare 2014.
It is what it is.

We pay for our healthcare in this country (US).
 
My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
 
we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
80%! Last year it was 90%, now 80%.
 
Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
She has PANDAS. I can't help you.
 
He billed our insurance company I don't know what, but I got my 20% bill for around $80.
So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
Can't help, bye-bye.
 
So you see Pik, welcome to American healthcare 2014.
It is what it is.

Though we do see OCD behaviors cycle around in terms of what's more prominent versus recessive, a sudden return of a "forgotten" behavior would make we wonder about some fresh autoimmune onslaught, for sure. Something your guests (from another part of the country?) may have brought with them, though ordinarily innocuous, because it is foreign to DD, she's reacting to it? Or even a change in the pollen/mold count, if she's at all susceptible to that?
 
Or, it could be too that their departure (transition) is stressing her a bit, and that's translating into more behaviors. There's a paper floating around somewhere here about how stress contributes to a more permeable blood brain barrier, so in that respect, this PANDAS/PANS thing can seem like a merry-go-round that's difficult to get off. Not feeling well causes stress, stress opens the BBB, more nasties get into the brain where they don't belong, makes one feel unwell, feeling unwell increases stress . . . . . you get the picture. Stress can also contribute to higher histamine production which, in at least some cases, can help fuel stress-related behaviors (it does in my DS).
 
I'd keep an extra eye on her for a couple of days and try to keep things low-key to the extent possible. If it is the whole BBB thing, things might settle down within 24-48 hours.
 
Good luck!