EAMom

Ughh. Sorry. Was it the rifampin/clindamycin that helped your OCD? I wonder if leaky gut/intestinal permeability might be compounding your symptoms (esp with the weird weight gain). Have you ever tried cutting out gluten (also soy/dairy)? It seems like the intestinal permeability goes hand in hand with other autoimmune diseases and can contribute to inflammation. http://www.weightandwellness.com/resources/articles-and-videos/the-deli-detective/gluten-free-eating/ and http://www.weightandwellness.com/radio-show/search-for-previous-radio-shows/the-rise-in-autoimmune-problems/ Anyway, at least the diet thing is something you can change w/out the doctor's okay. Also, probiotics can help but be careful b/c some people find probiotics make things worse (esp if there are strep strains, s. therm for example). Supposedly antibiotics can also affect intestinal permeability. Note: my PANDAS dd (teenager) isn't gluten free but I would like her to be. I just couldn't get her on board with the idea. Pen injections would be easier on the gut than other options. But definitely do whatever antibiotics might help. I wouldn't worry too much about slow to drop ASO titers. But, a rise would be worrisome. Also, your symptoms, joint pain/ear throat problems is what I would gauge things buy. ASO can just drop very slowly in some people (years). I wonder if an ENT would be helpful? I still wonder about Lyme...

I'm guessing ASOT is ASO? Where are you located? To answer your original question, NO! a low ASO (especially one taken at a single point of time, many months after onset of behavior change) absolutely does not rule out PANDAS. My dd never had elevated ASO, despite positive throat cultures and a high Cunningham Test. http://www.moleculera.com/ <---there's a good little video in this link, explaining PANDAS/PANS The urinary frequency/behavior change 3 mo. after "many throat infections" (were these strep? were they swabbed?)/scarlet fever (which is strep) screams PANDAS. 1) ASO is not a "test for PANDAS", it is not the antibody responsible for PANDAS symptoms 2) it may helpful to "prove" a child had an unnoticed/undiagnosed strep infection in the past (but you already knew that he had strep throat infections/scarlet fever) 3) not all kids get a rise in ASO (or anti-dnase even with culture-able strep. Also, the rise (and not the a single value) is more important...you want to show titers are increasing, which means you need to get lucky and draw the blood at the right time (and again in 4-6 weeks). If the blood is drawn too late (eg after several months) you may have missed the rise/elevation (titers may have risen and then fallen) entirely http://latitudes.org/forums/index.php?showtopic=16476 In your case, you don't know if your ASO was low because 1) it never rose (happens in many PANDAS kids) 2) if it rose, but b/c your kid had a low baseline, it never rose out of the normal range 3) if it rose, but then fell again (by the time blood was drawn months later) For starters, I would recommend getting your son, plus all other family members, throat swabbed for strep. Do the 72 hour culture if the rapid is negative. You want to make sure there isn't obvious culture-able strep in the household. This is a good site, with a diagnostic flow chart https://www.pandasppn.org/ Medical providers (physicians, therapists, nurses can join) , but anybody can look at the information, flow charts https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf etc.

Yup...and the other issue with twice exceptional kids, is they might have a high IQ, so even "on grade level" might be quite low for them. Also, sometimes the grade level standards aren't all that high. At the public elementary school our dd went to, pretty much all of the kids were "above grade level", so to say our kid was performing "at grade level" sounded good, but she was floundering. Compared to her other classmates, she wasn't doing well. But the school didn't care about her IQ or how her classmates did, just that she was "at grade level."

Here's a good link on urinary frequency. I don't believe it's necessarily OCD: "Specifically, the basal ganglia are part of the connections that allow the brain to keep the bladder quiet while filling." http://latitudes.org/forums/index.php?showtopic=11833 Parkinsons patients also have urinary frequency, b/c of basal ganglia problems.

I also had joint pain and swelling with a strep infection a few years ago. I don't think my PANDAS dd has however.

Here is a 2014 NY Times article on Lithium: http://www.nytimes.com/2014/09/14/opinion/sunday/should-we-all-take-a-bit-of-lithium.html?_r=0 "This amount is less than a thousandth of the minimum daily dose given for bipolar disorders and for depression that doesn’t respond to antidepressants. Although it seems strange that the microscopic amounts of lithium found in groundwater could have any substantial medical impact, the more scientists look for such effects, the more they seem to discover. Evidence is slowly accumulating that relatively tiny doses of lithium can have beneficial effects. They appear to decrease suicide rates significantly and may even promote brain health and improve mood." and a 2012 article http://www.psychologytoday.com/blog/evolutionary-psychiatry/201201/could-you-have-lithium-deficiency "When one mentions lithium, most people have a negative reaction. They think of One Flew Over the Cuckoo's Nest, drooling, and lobotomies. And lithium in pharmacologic doses has some terrible downsides. However, lithium is, in fact, an essential trace mineral, present in many water systems with some very beneficial effects in the brain."

I should note that Swedo called urinary frequency a "hard neuro symptom" of PANDAS. This was at the CA Symposium (4/14) in Burlingame. Here's a link with some other tidbits if you want to read more:http://latitudes.org/forums/index.php?showtopic=22653

My dd's first symptoms were urinary frequency (only), this was with an early undiagnosed flare (about age 4). When she got severe (and we finally learned of PANDAS) initially she had lots of tantrums and "difficult behavior". Also anxiety. The OCD wasn't obvious to us (until later) but she was 7.5 years old. She kept a lot of it hidden and I actually believe her tantrums were partly due to OCD/rigid thinking/things had to be a certain way. Tics came later. Also, when she finally did have OCD, it wasn't the typical type of OCD that you think of in adults (hand washing etc). In fact, at one point she went several weeks w/out washing her hands. Mostly it was rages, anorexia, considered herself to be a "bad person", depression. She never had high strep titers, but we insisted on a throat culture (swab) 2mo after onset of behavior change and that was positive. We got the whole family swabbed and younger sister was an asymptomatic strep carrier, swab positive w/out any symptoms (we were eventually able to clear her with Azithromycin). Also we had PANDAS dd swabbed in her vaginal area (due to blood) and that was positive for strep as well. Eventually when we did the Cunningham test, that also confirmed PANDAS.

I wonder if it isn't the exercise so much as the competition, and emotional situation? I guess the thing would be to try some other type of exercise (like running in a non-competitive fashion) and see if you get have the same issues.

Well, it's also possible this is still PANDAS b/c it's hard to know that a strep infection (even undiagnosed) didn't start things at some point, and now other infections are continuing the symptoms. This is from Swedo's first 50 cases paper: "Two clinical notes should be made. First, not all symptom exacerbations were preceded by GABHS infections; viral infections or other illnesses could also trigger symptom exacerbations. This is in keeping with the known models of immune responsivity—primary responses are specific (e.g., directed against a particular epitope on the GABHS), while secondary responses are more generalized. Thus, the lack of evidence for a preceding strep infection in a particular episode does not preclude the diagnosis of PANDAS." http://www.google.com/url?"sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCkQFjAB&url=http%3A%2F%2Fwww.researchgate.net%2Fpublication%2F13767077_Pediatric_autoimmune_neuropsychiatric_disorders_associated_with_streptococcal_infections_clinical_description_of_the_first_50_cases%2Flinks%2F02e7e52582ed15149f000000&ei=bXRiVIboE4arogSTg4HYCQ&usg=AFQjCNEhOgmkepfTbw2TuFvchhfAnV4y4A&bvm=bv.79400599,d.cGU Also, sometimes an antibiotic trial is still helpful b/c strep may linger in difficult to culture places (deep in tonsilar tissue, or in sinuses). Also, strep antibodies (ASO, anti-dnase doesn't always rise (or stay elevated) even in the face of culture-able strep. With both PANDAS, PANS, and Pitands stress can increase symptoms. One theory is that stress (epinephrine) opens up the blood brain barrier. Is your son "tic only" or does he have other symptoms? Technically, if he is "tic only" then he shouldn't be classified as PANS (not that it really matters). Here is a thread that you might find useful, the difference between PANDAS and PANS http://latitudes.org/forums/index.php?showtopic=16557 Did Dr. Rao do the Cunningham Test on your son? I do agree things are tough with teens. Getting them on board with treatment is so important. I would have loved to have my dd14 do a good gluten free trial, but I couldn't get her on board with that. She's also very selective about what supps she'll take. She is good about taking Azith and her anti-histamine. My dd is doing pretty well now, but has some low grade residual OCD. She won't do any type of ERP as she feels that her symptoms aren't problematic. But, we notice them, and they bother us. Also, they might bother her, but she won't admit it (you know, teenagers). I also wonder if your son could have Lyme. I wonder b/c it's usually the kids with underlying Lyme who have an older onset of symptoms. Just my theory. My dd (who I assume doesn't have Lyme) got better after puberty. Lyme on the other hand, often "comes out" or gets worse with puberty.

Monarchcat, Can you tell me more about Lithium and 23andme? Which SNPS should we be looking at? Thanks!

I think the 120 mg is 4.8 mg of the elemental Lithium? It's kind of confusing. I have heard of kids taking much less, like less than 1 mg /day of the elemental. So maybe 1/4 tablet 1x daily might be a better starting point for the smaller pandas kids?

It doesn't look like there is a test for lithium deficiency? WilliamSFebruary 26, 2011 at 2:23 PM Is there a believable test for lithium deficiency? Might be interesting for people to experiment with a low dose if they had reason to believe they were not replete. I also wonder if anyone has established whether or not psychiatric patients who respond to lithium are deficient compared to healthy people. Reply Emily Deans, M.D.February 27, 2011 at 10:06 AM William - as far as I know there is no test for lithium deficiency. The test we use for measuring lithium levels is for phamacologic doses - for bipolar disorder a dose is typically 900-1500 mg daily, and that will typically land you a trough blood level of between 0.6 and 1. Tests generally don't measure anything less than 0.3. A 2mg dose would be well, well beneath 0.3. http://evolutionarypsychiatry.blogspot.com/2011/02/lithium-and-longevity.html?m=1

pr40 What brand did you use and how were you giving a day? How old was your son at the time?

Here's more on Lithium Orotate http://www.globalhealingcenter.com/natural-health/is-lithium-orotate-good-or-bad-for-you/

Another article: "It can be speculated that very low but very long lithium exposure can enhance neurotrophic factors, neuroprotective factors and/or neurogenesis, which may account for a reduced risk of suicide. The authors of the two Japanese studies get rather enthusiastic, recommending supplementation at a level of about 2mg per day for human populations with the proposed effect to control behavior, increase longevity, and reduce suicide." http://www.psychologytoday.com/.../could-you-have-lithium... Also mentions that Lithium is anti-inflammatory for the brain. (This might be the higher doses?) "When rats are given lithium-laced or lithium-free food for 6 weeks, the lithium-dosed rats had less arachidonic acid, and more 17-OH DHA, which is an anti-inflammatory metabolite of the fish oil, DHA. 17-OH DHA seems to inhibit all sorts of inflammatory proteins in the brain. Interestingly enough, lithium has been shown to be the only effective drug (at least to slow the progression down) in another inflammatory, progressive, and invariably fatal neurotoxic disease, ALS, which is also known as Lou Gerhig's disease (2), and lithium is being studied in HIV, dementia and Alzheimer's disease."

Does anybody have any thoughts or experiences...may help prevent suicide, prevent dementia, improve mood: http://www.nytimes.com/2014/09/14/opinion/sunday/should-we-all-take-a-bit-of-lithium.html?_r=0 "Lithium is a naturally occurring element, not a molecule like most medications, and it is present in the United States, depending on the geographic area, at concentrations that can range widely, from undetectable to around .170 milligrams per liter. This amount is less than a thousandth of the minimum daily dose given for bipolar disorders and for depression that doesn’t respond to antidepressants. Although it seems strange that the microscopic amounts of lithium found in groundwater could have any substantial medical impact, the more scientists look for such effects, the more they seem to discover. Evidence is slowly accumulating that relatively tiny doses of lithium can have beneficial effects. They appear to decrease suicide rates significantly and may even promote brain health and improve mood." Available on Amazon http://www.amazon.com/Nutrient-Carriers-Advance-Research-Lithium/dp/B000VHCU8M/ref=pd_sbs_hpc_1?ie=UTF8&refRID=0TGKYJ2W2TDVT78BCN3X This product is 120 mg which translates to 4.8 mg of elemental lithium. ^^the reviews are interesting

Have you tried Magnesium Glycinate for the restless legs? Try 400mg at bedtime.

Nicklemama, What she says in the interview also conflicts with the info provided in the FAQ site. The FAQ is sorely out of date, yet it remains up on the NIMH website. Ugh.

Yes, something like this, which is a yeast http://www.amazon.com/Jarrow-Formulas-Sacharomyces-Boulardii-Capsules/dp/B0013OVW0E

Very nice interview. However, I'm not happy about the end where Dr. Swedo recommends the NIH FAQ sitehttp://www.nimh.nih.gov/.../publications/pandas/index.shtml which has outdated information, and steers readers away from antibiotics and treating the inappropriate immune response. For example: "What are the treatment options for children with PANDAS? The treatments for children with PANDAS are the same as if they had other types of OCD or tic disorders. Children with OCD, regardless of whether or not their illness is strep triggered, benefit from cognitive behavioral therapy and/or anti-obsessional medications. A recent study showed that the combination of an SSRI medication (such as fluoxetine) and cognitive behavioral therapy was the best treatment for OCD, and that medication alone or cognitive behavioral therapy alone were better than no treatment, or use of a placebo (sugar pill). It often takes time for these treatments to work, so the sooner therapy is started, the better it is for the child. Children with strep triggered tics should be helped by the same tic medications that doctors use to treat other tic disorders. Your child's primary physician can help you decide which type of specialist your child may need to see to receive these treatments."

She got her period today (finally). I don't know how heavy it will be. I may cancel her appointment on Thursday (she has a conflict with an after school activity anyway).

http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0063 here's the abstract, you can read the full-text by clicking the link above Abstract Objective: Sudden onset clinically significant eating restrictions are a defining feature of the clinical presentation of some of the cases of pediatric acute-onset neuropsychiatric syndrome (PANS). Restrictions in food intake are typically fueled by contamination fears; fears of choking, vomiting, or swallowing; and/or sensory issues, such as texture, taste, or olfactory concerns. However, body image distortions may also be present. We investigate the clinical presentation of PANS disordered eating and compare it with that of other eating disorders. Methods: We describe 29 patients who met diagnostic criteria for PANS. Most also exhibited evidence that the symptoms might be sequelae of infections with Group A streptococcal bacteria (the pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections [PANDAS] subgroup of PANS). Results: The clinical presentations are remarkable for a male predominance (2:1 M:F), young age of the affected children (mean = 9 years; range 5–12 years), acuity of symptom onset, and comorbid neuropsychiatric symptoms. Conclusions: The food refusal associated with PANS is compared with symptoms listed for the new Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-V) diagnosis of avoidant/restrictive food intake disorder (ARFID). Treatment implications are discussed, as well as directions for further research.

DsMom said "This is a newer study published on D1 and D2 autoantibody levels correlated with SC. It's saying an imbalance in the dopaminergic system is more likely (duh!) causing greater sensitivity to Dopamine stimulus. Keep DD away from Vit D supps if she's taking any, see if you notice a change in her behavior." Can somebody explain what the problem is with Vitamin D supplements? I know Dr. Murphy recommended aiming for a Vitamin D level of 50 at one of the IOCDF conferences.

@Thanks Missmom, I'll ask about a cyst as well. I guess the thing that concerns me is if it is b/c of the female athlete triad, I don't want her bone density to be so compromised, given her family history.