EAMom

http://stanmed.stanford.edu/2014fall/brain-attack.html Here's a bit: "Children who meet diagnostic criteria for PANS have sudden, severe obsessive-compulsive behavior or anorexia, along with so many other problems that the child can barely function. These may include separation anxiety so powerful the child cannot bear to be more than a few feet from a parent, bizarre inhibitions about food, deterioration in schoolwork, intense insomnia or, as the Nelsons observed in Paul Michael, violent rages when the child’s obsessions cannot be satisfied. “In some ways, it’s like having your kid suddenly become an Alzheimer’s patient, or like having your child revert back to being a toddler,” says Jennifer Frankovich, MD, clinical assistant professor of pediatric rheumatology at the School of Medicine and one of the clinic’s founders. “We can’t say how many kids with psychiatric symptoms have an underlying immune or inflammatory component to their disorder, but given the burgeoning research indicating that inflammation drives mood disorders and other psychiatric problems, it’s likely to be a large subset of children and even adults diagnosed with psychiatric illnesses,” says Kiki Chang, MD, professor of psychiatry and behavioral sciences."

I've recently started taking Magnesium Glycinate myself. I've been listening to some of these podcasts (not PANDAS, but nutrition) and that's what they recommend. They have some topics (mood, depression, ADHD, etc) that might be of interest to PANDAS parents. They also have some shows on Gluten. You can also download shows on iTunes. http://www.weightandwellness.com/radio-show/search-for-previous-radio-shows/ More on Magnesium and the different types http://articles.mercola.com/sites/articles/archive/2012/12/17/magnesium-benefits.aspx

This sounds like undiagnosed PANDAS. http://blogs.babycenter.com/mom_stories/07022014-ocd-childhood-parenting/

NIMH did have a good page up a while back (which is probably what 4nikki meant to post). Apparently it got accidentally removed. Swedo is aware of this (mentioned it at the recent CA conference). However it has not yet returned! Unfortunately the FAQ page, which should have been removed years ago, is still there.

Be careful! The NIMH link (FAQ) is sorely out of date and has some dangerous information. (This is the link 4nikki posted.)

Here's the Moleculera site. It also has lots of PANDAS info, as well as info about the test:http://www.moleculera.com/research/ Here's some basic info from the IOCDF (compiled by Dr. Jenike of Harvard) http://www.ocfoundation.org/PANDAS/ PANDAS network also has lots of information http://pandasnetwork.org/testing_outcome/diagnostic-tests/

I asked in another parent group, and someone mentioned a CA lawyer who was on Dr. Phil (the Justina Pelletier episode)She was the attorney seated in the audience on Dr. Phil when Justina's father was on: Los Angeles-based family law attorney and child advocate Areva Martin.

Momofadult... Here's a link to some notes http://latitudes.org/forums/index.php?showtopic=22653 There will be you tube videos eventually but I don't know when. PANDASnetwork.org might also post some notes, but I don't know when. Yes, I don't think LPCH would see an adult. I would recommend Hillpark (Amy Smith NP and/or Dr. Schweig) in Petaluma as PANDAS friendly (also Lyme friendly, and they see adults). They are an integrative group. Amy Smith is a PANDAS parent as well. She was the one who organized/started the Burlingame conference, and her son (off to USC in the fall) also spoke. Where is your neurologist? There was also a PANS (30? year old?) adult who spoke at the conference. I think she was going to UCSF? Her name is Vanessa Vann.

Here's a thread on Singulair and allergies http://latitudes.org/forums/index.php?showtopic=13536 Also, Dr. Murphy (at one of the IOCDF conferences, either Chicago or San Diego?) advised against using Singulair in PANDAS kids as it can cause OCD (or something like that).

I don't think Dr. B is a lyme expert (he's not an LLMD), but I think he knows enough to test for Lyme (esp being in CT!). IMHO I would treat the Lyme (did he test for any coinfections like Babeisa or Bartonella?) before considering Rituximab. Rituximab may decrease the autoimmune response to Lyme (don't know why it wouldn't) but since it suppresses the immune system, I'm worried that won't be enough and it may make the underlying infection harder to treat in the long run. I know Prednisone (esp. long term) is contraindicated in Lyme, and I would think Rituximab would be even worse (in terms of immune suppression). If he is worse on the doxy it may be a herx, or he may not be tolerating it for other reasons. I know a LLMD could help you sort this out. Some also use herbal antibiotics. Also, if tick borne diseases are your underlying problem, treating those may be enough, w/out going down the Rituximab road.

I would be worried that there is still an infection, esp with the history of Lyme. I wonder if Lyme is still there (and or coinfections like Babesia or bartonella).

Have you contacted Diana P.? She is local so may know of someone.

what antibiotic is she on? what dose? is she on antibiotics long term? some children can do quite well with just antibiotics, but you have to do a high enough dose of the right antibiotic if you do plasmapheresis, you will still need antibiotics afterwards to prevent future infections here are some notes from the recent CA symposium: Treatment: "mild"-antibiotics "can't get out of the house"-IVIG (I assume this means with abs, not alone! In the NIMH studies they used long term abs after IVIG) "life-threatening" (suicidal, danger, anorexia)-plamapheresis (I also assume this means also follow with antibiotics, as they did in the NIMH studies) -SSRI-start with 1/10 of the regular dose -The team at NIMH would be happy to talk to doctors (a Canadian mom was saying she had trouble getting any sort of treatment) -follow AAP recommendations for prophylaxis for SC. This is antibiotic prophylaxis until age 21. She said if that isn't practical, then she said until they are symptom free for 2 years. Since the immune system is activated, you need to get back to the point of tolerance. Here's a link to the full discussion: http://latitudes.org/forums/index.php?showtopic=22653

Are you giving the Augmentin 2x daily, so 200 mg twice a day? I would give some Ibuprofen (200mg) with the Azith, we were giving them together, and I wonder if that helped. Are you sure Medicaid won't cover the cost of the panel? You might contact Moleculera and see if they know anything. My dd had to drink Boost when she was hospitalized for anorexia and hated it.

I haven't read all the responses closely...has she had the Cunningham test? That would give you hard evidence that her eating issues are autoimmune (and not just "learned" or whatever). Our rheumy said it is usually (often?) covered by insurance. I also worry about underlying tick borne diseases, esp. since you are in CT. Where is she on the growth charts for height and weight? My dd was hospitalized for anorexia (acute food refusal) in 2008 when she was 7.5 years (2nd grade). Her weight went from 25th percentile (her norm growing up) to completely off the charts. She went from 49 to 43 pounds in 2 weeks. It was very scary and she had to be hospitalized for acute food refusal. That was when we finally learned of PANDAS and demanded a throat culture (positive). Her sister (a carrier) was also positive on the rapid. She now doing well (in school, healthy weight) although she has minimal residual OCD (we are repeating the Cunningham test to see if it is still autoimmune). She has had 3 HD IVIG's (last one was almost 2 years ago) and still takes Azithromycin. She's in the 8th grade now. Have you tested family members (throat swab) for strep (clearing strep carrier sister was important to getting PANDAS dd well)? Also check for perianal strep (at the recent CA conference, Swedo mentioned that as a common cause of refractory PANDAS). Also, what doses of Azith and Augmentin is she getting (how many mg and how many times a day?). Sometimes these docs don't give a high enough dose. My dd took 250mg/day of Azith when she was 43 pounds...she started to eat after 2 weeks. After 6 weeks her other symptoms were much improved (later regressed with viral infections so we did HD IVIG). If you do try a psych med (like prozac or zoloft) this should be in addition to, not instead of, medical therapy. Swedo recommends 1/10 of the usual dose to start as these kids are very sensitive to activation. (My dd was on 10mg a day of prozac for a long time, iit did help...10mg/day should be the max prozac dose for a pandas kid). SSRI's can be antiinflammatory http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/ but you have to be super careful!! More is NOT better, and I would be very leary of doing more than 1 psych drug at a time. Psych drugs can also be tricky since their side effects (activation) can look like PANDAS symptoms!

CJsMom and Bradsmom, You might consider getting an evaluation at Hillpark with Amy Smith or Dr. Schweig. I just wonder if your son might have an un diagnosed tick borne infection. LPCH is great (we go there) but is not Lyme savy (our good friend who isn't PANS but had fatigue, pain, brain fog) went undiagnosed there for well over year until the parents finally went to a LLMD (had babesia, Lyme, erilichia, mycoplasma). LPCH (not the PANS clinic per se) were giving her a diagnosis of "post viral chronic fatigue syndrome" (which really has NO medical treatment)..and LPCH balked at any Lyme/tick testing despite lots of camping (the child was 13-14 at the time, the same docs insisted on HIV and pregnancy testing. Amy Smith NP (at the recent Northern Ca PANDAS conference) said that 30% of their patients turn out to be CDC positive for Lyme. I would imagine even more are positive yet don't meet the strict CDC criteria. I believe Bartonella is one Lyme co-infection that is known to cause rages... Also if IVIG doesn't "stick" that makes me think Lyme (or another latent infection)

I kind of remember this video. It was a younger girl...kept getting anorexia every time she got strep. No mention getting on long term abs.

Here's an article on breast milk contamination with glyphosate http://sustainablepulse.com/2014/04/06/worlds-number-1-herbicide-discovered-u-s-mothers-breast-milk/#.U2Qva_ldXDU Your second link works now!

Hi Rowingmom, your 2nd link didn't work for me.

Hi! I wasn't there for this presentation (it was on Sunday?) but I did go to a lecture by Dr. Stephanie Seneff (from MIT, but she was in the Bay Area that weekend...maybe I should have invited her go to the conference!) last Monday. (Dr. Seneff is my neighbor's mother!) Here is a link to her homepage which has links to her presentations (including the one I went to on April 28, 2014). http://people.csail.mit.edu/seneff/ She also has many you tube videos up. Here is one from 2013 https://www.youtube.com/watch?v=MqWwhggnbyw Her material was eye opening...basically she saying Roundup (glyphosate) is THE primary underlying cause behind the RISE in autism. I think she has mentioned Mom's Across America in her talks and some of Seneff's papers are listed on the Mom's across America site http://www.momsacrossamerica.com/tags/samsel_and_seneff GMO foods are especially bad because they basically absorb much more roundup than non-gmo food when sprayed.

Hi 3bmom and others! Thanks for posting! Here is a news article on the conference http://www.mercurynews.com/science/ci_25646083/parents-doctors-share-hellish-experiences-pans-pandas-disease Here are my notes from the doctors. I don't really have notes on the other presenters (parents, Amy Smith's son, etc). I also took notes from the afternoon discussion which I might post at a later date. Swedo: -no good drug against dopamine d2 receptors (future treatment?) -she mentioned a study of 5 children with non-pandas OCD who got plasmapheresis and there was no improvement (here's a link http://www.sciencedirect.com/science/article/pii/S0890856710601104 ) -sleep studies: PANDAS kids have a REM behavior disorder (kicking, flailing) -urinary frequency is a hard neuro symptom -perianal strep is a common cause of treatment refractory PANDAS -NIMH is thrilled to receive strep samples (they want to do strain analysis) -ASO, anti-dnase B, ACHO (sp?) are 3 strep titers. They will only pick up 2/3 of cases and need a second set of titers in 6-8 weeks (looking for rise). Note: she didn't mention anything about timing...that you need to get the sample in the acute phase, but I also assume this is important (so looking for rising titers may not be useful months or years later) -ANA 56% of PANDAS kids were ANA positive at the NIH (note: she said 10% of healthy kids are ANA positive) -Swallowing study (I have this in my notes but no explanation, I assume this means PANDAS kids may have swallowing problems and a study is recommended?) -Polysonography 1) disruption of sleep wake cycle 2) failure to establish atony during REM -EEG to r/o encephalopathy -Lumbar punctures to obtain CSF samples looking for anti-neuronal antibodies to make sure it's not something else. (Note: I don't know if she was recommending this to all PANDAS kids? or just that they were doing this at the NIH? also, I don't know how many "something elses" they are finding when they do Lumbar punctures eg how useful this really is in practice) -I realized in hindsight that she didn't mention the Cunningham test, which I thought was a little odd (note: our rheumy said insurance is often covering the cost of the test -clavulonic acid: affects dopamine and glutamate Treatment: "mild"-antibiotics "can't get out of the house"-IVIG (I assume this means with abs, not alone! In the NIMH studies they used long term abs after IVIG) "life-threatening" (suicidal, danger, anorexia)-plamapheresis (I also assume this means also follow with antibiotics, as they did in the NIMH studies) -SSRI-start with 1/10 of the regular dose -The team at NIMH would be happy to talk to doctors (a Canadian mom was saying she had trouble getting any sort of treatment) -follow AAP recommendations for prophylaxis for SC. This is antibiotic prophylaxis until age 21. She said if that isn't practical, then she said until they are symptom free for 2 years. Since the immune system is activated, you need to get back to the point of tolerance. -recommends judicious use of CBT and psych drugs (ERP+ medication) --note: she mentioned a study where ERP and medication helped 70% of OCD in kids note: I think she is referring to this study, which isn't of PANDAS kids, just garden variety OCD, and all the kids were 7 or older... http://www.sciencedaily.com/releases/2006/10/061018094715.htm) (IMHO I'm not sure you can extrapolate from this study to PANDAS kids, esp younger ones and severe cases where the autoimmunity isn't yet under control) -recommends a book "How I drove OCD off my land" (Is this it? http://www.librarything.com/work/7767377 ) -someone asked about PANDAS in adults. She said they do see rheumatic heart disease in young adults. Also, she said (? notes unclear) there are cases of "adult" acute onset, up to 30 years of age. Dr. K. is treating young adults with IVIG. (Of course, there can be cases with onset as a child, which persist into adulthood. But, I think the question was about onset as a young adult?) -if you treat soon in the course of illness (with antibiotics-not sure how long, 1 mo?), they many never have any other problems. Diana P. says PANDAS network has record of about 40 such cases...so these may not require prophylaxis?? Alarcio: note: her lecture was pretty "science-y" and I was sitting in back and couldn't see the screen very well...I am looking forward to the you tubes videos! (She also went over some PANDAS/PANS cases.) -prostaglandins affect neuro circuitry -disruption of tight junction (in blood brain barrier): cytokines, antibodies, stress -antibodies in the brain can go into the rest of the body -chronic latent infection and chronic underlying inflammation can disrupt the blood brain barrier -anything that stimulates the immune response can affect the brain -antibodies and cytokines (defuse?) against the bbb -histamine in the brain -hashimoto's, pandas, encephalopathy are all under the umbrella of psychoimmuno neurological syndrome (my notes are sketchy here) -mentioned on how the fields of psychiatry and neurology are artificial divisions (not sure she used this word)...She said "It's all the same brain!" -Problem--no practice guidelines for doctors -there is also a non-microbial role of antibiotics. They are anti-inflammatory and neuro-immune (note: I hope I got this right! she was going fast and I was trying to look at her slides which I couldn't see well, there's a bunch I missed.) Frankovich: went over several PANDAS/PANS cases. Not all were Swedo's "acute onset". Some took 8 or more weeks to development of full PANS symptoms. -abnormal immune activation -difficulty clearing infection -EARLY-innate immune system -Chronic arthritis- (I think she was using arthritis as an example? similar process in PANDAS/PANS?)-adaptive immune system is involved, programmed immune system that is not turning off -Alzheimer's patients deteriorate with infection -Tessa Gallo http://news.msn.com/in-depth/misdiagnosed-bipolar-one-girls-struggle-to-get-the-right-treatment had high antibodies to dopamine, lysoganglioside, tubulin, and cam-kinase ll (this is the Cunningham test). She also had had a positive histone antibody ( think this is a newer test they've been doing for about 6 mo.?). It sounded like they did extensive testing to find an underlying infectious trigger, but didn't find one. Dr. F. when over her story (as did her mother in a separate presentation). She did respond to steroids, and later had further improvement with pheresis and rituximab (a powerful immunosuppressant, potent and dangerous so you only want to use in the most severe cases). -cellcept-makes t cells and b cells quiet -rituximab-potent dangerous immune suppression note: I think Tessa is on Rituximab, not sure about cellcept? Dr. F. says an injection lasts 6 mo. For Tessa, it seems to last a little less, as she seems to flare (2x ?) each time towards the end of the 6 mo. -only 14% of the patients they see in their clinic meet the very strict PANDAS criteria -47% of 1st relatives (sibling or parent) of PANS clinic patients have inflammatory back pain -41% of pans patients have a 1st degree relative with a psych. diagnosis (are these relatives undiagnosed PANDAS/PANS?) New onset PANDAS cohort -urinary frequency 65% -pain 94% at fibromyalgia tender points (sensory amplification). She sees rheumatologic symptoms in PANS patients (you have to know how to do the test, and also kids won't always admit to pain, but if you look at them you can see it is hurting). -Dr. Kiki Chang (Stanford psychiatrist) is studying these kids (need money for studies, if they have studies, then Stanford will back them on seeing more kids in PANS clinic...or something like that!). Functional MRI's, banking serum. -trying to develop treatment guidelines, PANS is very non-specific now -even "simple" PANDAS cases can get 2-3 mo. to get back to baseline Cooperstock: -vaccines area touchy issue (ha ha no kidding!) (I don't have this in my notes, but I think he was one who had a case that was triggered by vaccines?) -recommends strep culture at onset and flares -can have prolonged ASO ADB, strep antibodies (not sure what this meant? only PANDAS kids, or all with strep?) -strep can persist (eg in tonsils) for months and months. It can colonize deep in the tonsil tissue. Culture can misrespresent (be a false negative) -does strep colonize the nose? -mycoplasma-won't know unless you test for it. It's very common -parts of the basal ganglia: caudate is OCD, putamen is tics, (there was third with was ADHD?) -one molecule stands out....GlcNAC (N-acetyl d glucosamine) -strep can induce GlcNAC antibodies, GlcNAC also present on brain targets -GlcNAC is a key autoimmune target on D2, lysoganglioside, tubulin, neural cell (notes sketchy here) -can other common bacteria cause increased GlcNAC? -mentioned a vaccine (development far down the road) to reverse autoimmune dz--a tolerazing (sp?) vaccine (reverses type 2 diabetes) -a mom asked about a PANDAS kid with lots of cavities. He said "Dental carries are an infectious disease". (Amy Smith NP recommended testing for celiacs as well, because that can cause erosion of teeth and pre-dispose to cavities) Smith: -infection triggered neuropsychiatric syndrome -30% of her PANDAS/PANS cases are CDC positive for Lyme -flaws in the 2 tier testing for Lyme...it only picks up 56% of Lyme cases -

I wonder if it gets some of the other strains? There's B. miyamotoi and (I think there's another one that's even newer?) http://news.stanford.edu/news/2014/february/ticks-bay-area-021814.html

Where do you live?

Stress could open up the blood brain barrier and cause increased PANDAS symptoms. Also, it's possible that your child was exposed to something (virus or bacteria) at the game which is causing the flare. Have you given Ibuprofen?

There is a lot of "stealth strep" around which may be one reason for the "rise" in PANDAS. That means strep w/out typical symptoms (no sore throat, no fever). Too bad nobody throat cultured her when her symptoms started (before she started abs). It's very possible strep was the trigger. My dd had a throat positive culture when we finally learned of PANDAS and we insisted on a swab (2mo. after onset of behavior change). The doc was surprised "Gee her throat doesn't look sore." She also had vaginal strep (culture) and her sister was positive on the rapid (asymptomatic carrier). My PANDAS dd never got elevated strep titers. Her only abnormal bloodwork was the Moleculera (Cunningham) Test. Things I would recommend for now: 1) continue Azith. even increase the dose? how much does she weigh? 2) throat culture family members. If there is a strep carrier (culture positive, no symptoms) that will affect your PANDAS dd. Strep in the household must be cleared 3) start Ibuprofen 3x daily (typical dose for size). Make sure to give with food.This will help get brain inflammation down. 4) continue whatever you need to do keep her calorie intake up. You are in a much better position than we were! 5) from what you have described, your dd's symptoms sound like classic PANDAS. (Too bad nobody did a throat culture to look for strep! My dd never had elevated titers.) I ditto the suggestion (above by Kara) to test through Moleculera ("test for PANDAS") if you need to convince yourself this isn't strictly psychiatric (also may help get IVIG coverage in the future) 6) I agree with others about supplementing with zinc Avoid steroids if you suspect Lyme or are thinking of doing the Moleculera test (steroids will affect results). Also, you thought about getting one of those super blender things? (Vitamix?) where you can make healthy soups and smoothies? PS my PANDAS dd also has super high cholesterol. What were your dd's numbers? (I'll have to look mine up later...I think had a thread about it somewhere)> PS--we didn't use feeding tubes, but some do if it is bad enough and you can't get them to eat on their own