wisdom_seeker

Can someone help, please?

How uncomfortable! Has it gotten an better yet, since tics tend to morph to other tics? Could be a tic, or could be from the stimulation that results from the contractions of all the pelvic and thigh muscles involved in your tic. Some women are able to get an orgasm from some Yoga positions, or the stimulation of bike riding, or voluntary thigh movements. However, since feels like a micro-orgasm, it might simply be what you suppose -- the vaginal contractions that are part of your complex tic.

(sorry- I messed up the quote). Plum99: "That part I couldn't imagine anyone fighting to be involved with." What part? And yes, I agree that it's the type of comprehensive PANS treatment center that all our kids deserve. I wish that my son had been considered eligible, but he did too good a job hiding his OCD (he thought we'd consider him crazy). And maybe he was too old, ... and we weren't sure if the symptoms began in Jan or in Aug 2015. It was a huge disappointment when we didn't get in despite the neurologist's and psychiatrist's recommendation. I think they avoid giving out their eligibility criteria to prevent families from gaming the system. Can't say I blame them. You can invalidate an otherwise excellent research trial by having too varied a population. But I still wish they also had an open treatment clinic, not just the research clinic.

have no personal experience; our PANS kid doesn't have tics.

We had success with hookworm for DS9, who used to get bacterial sinusitis with each viral infection, and this seemed to regulate his immune system so that a cold could stay just a cold. My older son also got 25 hookworm at the time he had PANS, and for him it seemed to help a bit, but what he really needed was sleep apnea surgery. While he had sleep apnea (~27 arousals/hr) then he could not get rid of a chronic sinus infection. Without the deep sleep, his body was not effective at clearing the infection and then turning off the immune system, and his immune system just stayed in overdrive. So not a panacea, but we did find it helpful. Do ask to see the lab results for the donor, to make sure that they don't carry any bugs you don't want. A reputable organization will be happy to supply that. The hookworm larvae are cleaned by multiple steps (washed with multiple antibiotics, maybe alcohol... I don't remember). It's a process with some of the same risks and safeguards as IVIG or stool transplants, but with a less-established peer-reviewed process. So getting some verification that the larvae donor is safe is simply a prudent step.

I've got a few questions: ECP test:do LLMDs think the ECP (eosinophil cationic protein) test is useful to monitor the intensity of babesia infection? Would IVIG invalidate the ECP test, like it would an IgM/IgG assay? treatment:I've picked up prescriptions for Alinia and Malarone for the babesia. What side effects should I expect from one or both? Should I first start one and then the other to separate side effects? Also, kiddo's had Diflucan for 4 days last week. His headache's a bit worse, and he's been feeling blah and very stressed. Could that be a herx reaction? Kiddo thinks it is from his fears of the impact of a climate-instability-denying, narcissistic, xenophobic, racist, misogynistic and Putin-friendly bully (that's pretty much a quote). He is scared for the world, not just the US. Thus it's hard for me to tell a herx reaction, and whether to add more drugs to the mix.

We've used Biofusion Immunoglobulin Pharmacy (just purchased by Kroger, and renamed Kroger Specialty Pharmacy) for the drug and arrangements, and they sent an infusion RN from the Nurse Registry in Palo Alto to our house. Were very happy with both. Kroger Specialty Pharmacy only does infusion treatments, is very professionally led, and I was pleased with the pharmacist I spent quite a bit of time interviewing. They have their own network of home infusion nurses or nursing organizations, so they can likely schedule a treatment on much shorter notice than just via Nurse Registry. -WS PS. Accredo, the Anthem BC in-network home infusion company also contracts with a national network of infusion nurse organizations. They'd assured me that they could send an infusion RN anywhere in the Bay Area. No personal experience there though.

We are not members, but know a number of families who are (and are very grateful that they are). Stanford's is a multispecialty PANS clinic, so if your kid gets in, they would/could get seen on the same day by multiple specialists, including a PANS-knowledgeable and wonderful child psychiatrist. In addition to MDs, they have social workers to help the family cope better with a child or more with PANS flares, and a school specialist to help educate the school to better understand and accommodate the child. In addition they test children with EEGs for sleep issues (apparently quite common) and MRI (which is usually normal, but if not, will support getting IVIG reimbursed), and follow kids with tests for strep, the Cunningham panel, etc. They do have dedicated reimbursement specialists and a better record of getting IVIG coverage. The key negatives that I've heard (may not be most current info) is that they may have a maximum IVIG dose, so a large child may not get the full 1.5-2g/kg they don't test for Lyme & co-infections or treat those. Not that they don't believe mycoplasma, H1N1, Lyme etc, can trigger PANS, but that's not their area of expertise. I don't know how they feel about co-treating with an LLMD. They are swamped with applications, and ONLY take those kids that match the eligibility criteria for their current research studies. The families that are in seem very, very happy that they got in, feel supported and well cared for. Many of the recent-onset kids do get well with just antibiotics +/- steroids, but the Stanford ER is also PANS aware, and the PANS clinic can also arrange for IVIG/PEX very rapidly in case of extreme severity (e.g., sudden eating restriction with weight loss, psychosis, suicidality, ...) . And if a child doesn't continue to improve despite IVIG, they have quite a bit of experience with more advanced immune suppressors like rituximab or cellcept.

I have an annotated, highlighted and dog-eared version of Somnier's comprehensive, easy-to-read, authoritative, and beautifully illustrated compendium. And the post-streptococcal type of autoimmune encephalitis seems to be a particular interest, for he gives it a lot more space than almost all other types of AE. Have I mentioned that I find it incredibly useful??? I do. I am just very sorry that this not a peer-reviewed review journal article -- one one could cite in discussions with insurance companies!!! Does anyone know who Dr. Finn Somnier is and what he does? What is Statens Serum Institut in Denmark? Is he a basic or clinical researcher? A professor? Given how clearly this is written and illustrated, how well organized, I have wondered if it's a textbook chapter for a class he teaches.

I went. Would have loved to meet up with other Latitudes parents! What did you think? About the different IVIG protocols, Amy Smith's talk (I was impressed!!), behavioral treatment advice, etc.?

Thanks Llm! Yeah, I too read it as suspicious for Lyme. As far as babesia, the only way I can imagine having the result be IgM+ RNA- is if it is one of these infections that can hide within erythrocytes and only periodically pop out and spill the RNA into the blood. I made an appointment to follow up with his PANDAS / LLMP next week. Oh well. I'd been hoping we could avoid the mess that Lyme is, but also bemoaning that we don't know infection is/was driving the autoinflammation. But it is what it is, and better to know and be able to treat it. PS. I just found the eMedicine.medscape.com article on babesiosis, and they claim that 20% of folks with symptomatic Babesia have Lyme as well, and typically worse symptoms than with either infection alone. So if he has those, I guess he's still comparatively lucky. The only joint issue he has is painful and frequent joint popping, but that isn't new, just much worse than it used to be... and haven't heard of this problem from Lyme. Now to another issue you raised: Yes, it was, just before IVIG. On the other hand, I'm not surprised that at 10 weeks you son's IgeneX lit up like a christmas tree. And here's where I turn into a nerd, and for once question your conclusions. The half-life of IgG products is ~35 days. 10 weeks = 70 days = two half-lives ago. So at10 weeks he still had 1/4 of the antibodies pooled from > 1,000 donors! If it were me, and the Lyme/COI treatment were toxic, lengthy and/or expensive, I'd want to repeat IGeneX at both 10 and 15 weeks and compare. At 15 weeks I'd only have 1/8 of the donor antibodies left. If some gMs or IgGs increased from 10 to 15 weeks, I'd think new antibodies are being created to a current infection. If most bands weakened, AND there were no new or stronger bands, then I'd conclude the10-week bands ( maybe even the 15-week bands), were still from the donor immunoglobulins. (The logic is similar to confirming PANDAS via ASO titres: just like you need rising ASO titres of a recent strep infection, I'd think you need two serial titres far enough post-IVIG so a rise wouldn't be obscured by residual donor antibodies) It's not an academic exercise for me, since my impression is that Lyme/COI treatment IS extensive, expensive, and potentially neurotoxic. My DS had IVIG 5 wks ago so, by my calculations we won't get interpretable IgeneX results without doing these serial follow-up tests... but maybe I'm wrong about the toxicity of the anti-malaria babesia drugs, plus the Lyme treatment? I'd been lulled by previously negative IgG/IgM for Lyme, so this is all new to me.

I've read some old threads on IGeneX Lyme Western Blot, so I know that only some bands are specific for Lyme. However in viewing DS's results, I was surprised that IGeneX does not count any indeterminate bands, though many LLMDs seem to. What's the reason for / against? Can someone help explain whether DS does or does not have Lyme and/or babesiosis? Borrreliosis Western Blot bands: (I mark in RED the bands IGeneX states are specific for Lyme) 18 23-25 28 30 31 34 39 41 45 58 66 83-93 IgM - - - - I - - I - + - I IgG - - - - - - - + - - + - Babesiosis: B. microti IFA - IgM Serum 40 (neg < 20) B. microti IFA - IgG Serum < 40 (neg < 40) Babesia FISH Whole blood Neg BTW: He had been on Zithro for months, but was off Zithro ~ 6 days @ blood draw). So, can some of you veterans help me? What does the Western blot mean regarding a Lyme infection? How long do the IgM levels stay elevated? Should I think of him as having Lyme or not? How likely that he would have a co-infection w/o the Lyme itself? If IgM B. Microti is positive, wouldn't he also be positive by FISH? Are LLMDs pretty consistent in how they'd interpret this, or does it depend on the MD? Thanks. wisdom-seeker PS. DS had his first IVIG a month ago, and I need to decide when to repeat. He seems a bit better, though his headache is constant and annoying. And this week his anxiety and intrusive thoughts are off the chart, and he's feeling very off. Still, I don't want to repeat IVIG if we need to treat this stuff first.

So to clarify, you agree to repeat the IgG subclass testing? And the Cunnningham ONLY when he's actively ill (with strep)? DS gets many viral infections, though now that he's on abx prophylactically, they haven't turned into bacterial sinusitis any more... He does get a flare with each infection, and then refuses to go anywhere near needles. So his baseline Cunningham was a week before one of the flares, 3 weeks after a prednisone burst, as healthy as we could get him.

The other question is whether you replace his toothbrush (and wash his cup well) before finishing the antibiotics, so that he's not re-infecting himself with the toothbrush? https://medlineplus.gov/ency/article/000639.htm So I'm not sure whether a tonsillectomy itself would prevent all strep infections. For example, for my kids, the primary site was sinuses, and all sore throats, ear infections, even pneumonia, were complications of the sinuses. What they needed was sinus surgery to remove the diseased tissue and improve drainage; that's why a tonsillectomy wasn't sufficient to reduce how often they got sick. Oh, they also needed to have their sleep apnea discovered and treated! THAT improved their sleep, which improved their immunity, which finally prevented the recurring sinusitis that antibiotics never got rid of for long. (And neither one snored, nor was overweight, both simply were usually tired and crabby and often sick) So YMMV, but it's really important to figure out what all is contributing to the bad immunity and/or sources of infection -- consider bad sleep, recurring stress, nutrition, regular re-infections from toothbrushes or another family member (or grandparent, babysitter or dog), etc. Figuring out these other factors will of course also help with fighting Lyme etc. Good luck!

I just watched a video by Dr. Sue Swedo, who says that true carriers are rare (defined as having strep but not mounting an immune response, and no symptoms); most commonly children have "asymptomatic strep infections", in which they don't have the sore throat / fever, but their immune systems are involved. Since your younger son gets recurrent strep infections, it may be useful to take him for another throat culture a week after he finishes this antibiotic cycle, to make sure that it got eradicated. Rather than waiting for your canary to start ticcing. Ahh -- I found it: advice on how to verify if they're a true strep carrier: http://www.pediatricweb.com/webpost/iframe/MedicalConditions_465.asp?tArticleId=187 Which antibiotic to eradicate it? Can you get a throat culture next time with drug sensitivity testing? So that you can be sure that the antibiotic is the correct one. Or, here is the advice from pediatricweb, on recurrent strep: Lastly, about tonsillectomy. I'm a fan. It helped my kids' sleep apnea, and was less painful than I expected (especially for the 9yo, vs the 14yo). Here's what pediatricweb.com says: Of course, in your case it's less important how many your younger kid has, but how much of an impact there is on your PANDAS kid. So even if it's 4 within 2 years, you could well decide it's worth it. Not to mention, PANS runs in families, so if it was my kid I'd do it. (speaking not as an MD but purely as a mom of two PANS kids).

Boysrlove24, I think that DS is low on ferritin; he usually is. No idea about the CoQ10, but I bough a supplement for I'd been recommended it in the past. How would these be connected to headaches? Thesuzie, interesting - his allergist just suggested that this might be an atypical migraine, and suggested a trial of imitrex or elavil. It's not one sided, and it keeps going, but the sound hypersensitivity and worse balance issues make it suspicious, don't they? Thanks. WS

No, PANDAS is a clinical diagnosis, and insurance and MDs like to see objective measures. It's when we got the high CAMKII, all MDs became comfortable conceptualizing what he had as an autoimmune encephalitis. However PANS is still in his medical record, and that alone seems to have been enough to disqualify him from having IVIG covered :-(. The CAMKII is an indirect measure by a cell stimulation assay our insurance doesn't recognize (unlike the direct autoantibody assays). I've been hoping (fantasizing??) that if we find specific antineuronal auto-antibodies obviously elevated then insurance would accept a Dx of autoimmune encephalopathy due to _____ (say antitubulin), and cover IVIG to treat that. But I've never walked this road before. I know there are many here whose kids have had elevated autoantibodies. I don't know if it made any difference.

DS had done the Cunningham panel 8 months ago. CAMKII = ~184, Tubulin borderline, all else low. Responded well (~60%) to steroids; had a 60mg (<1mg/kg) prednisone burst 7ish weeks ago. I'm wondering about any tests to do pre-IVIG, tests that would get messed up by the Ig infusion. So what about the Cunningham panel? What is the likelihood that our results would be much different? That some other autoantibodies would be high on a re-test? Would insurance be more likely to pay for IVIG if some autoantibodies were high? Would it show us anything about the odds of IVIG working, or likely side effects from IVIG? Either of those would be reasons to re-do the test. I know nothing's been published about that, but perhaps your MDs have said anything? Or you've seen some patterns?

My DS16 has had a constant, unpleasant headache (+ sound hypersensitivity + other symptoms) since an infection and flare 6+ weeks ago. He's on azithromycin, Aleve (NSAID) round the clock, and anti-anxiety meds. Had a steroid burst when he got sick, which helped with many symptoms, got another flare 3 wks ago from the stress of start of school -- and that flare has not gotten better. Still, he's not had such a constant headache in previous flares. It's different than sinusitis headaches. He says it reminds him most of post-concussion headache he used to get. Any ideas what's going on? Constant pain is draining, demoralizing. Since he's already on the NSAID, turmeric, ginger and Neurontin as antiinflammatories, is there anything else I can do -- till we do IVIG?

Hi Ssoda, Herx reactions are essentially temporary "die-off" reactions, and though they can be miserable, they are a sign that an antibiotic is working, killing off bacteria. The symptoms are caused by toxins released when antibiotics cause some bacteria to die off quickly. So a child may look / act worse before they get better. But I don't remember which bacteria tend to cause them, how quickly the reactions set in, what things (like Motrin) can relieve the intensity, and how long they last. However, the fact that a child can get worse on an antibiotic often makes parents stop / swittch the antibiotic, when in fact it was the right one. I think we may have encountered that back when DS first had bad effects, when he started having severe muscle pains, irritability, and skin hypersensitivities within a few days of starting one antibiotic (omnicef?). We assumed it was an allergy, and so, even though DS's sinus infection was rapidly getting better, we switched to something else (augmentin?). The main thing that accomplished is that the sinus infection almost stopped improving, but the other symptoms continued. Turns out that those symptoms can also (rarely) be strep symptoms. And may have been the start of his PANS. But we didn't know. And I still don't. So I'll only respond to the parts I know a bit about. All the behavioral things you describe are common with PANS, including the sudden refusal to eat many things (that's classic), intense fears about things, meltdowns, and behavioral and speech regression. So I think that perhaps those started despite the antibiotics, not because of them. What about the uti? Was it culture-confirmed, or is it that she keeps running to pee frequently? If culture-confirmed, what is the bacterium they found, and what drugs was it sensitive to? Do you have any idea if she has any other infections (perianal? throat? ear? ) I don't understand the foot dragging. It can be OCD, or a coordination or pain problem, or ??. However redness in the joints makes me think post-strep rheumatic fever, which would certainly be worth investigating -- though probably not in the ER. The continuing rash and peeling puzzle me too. The good news is that many such rashes are distinctive, and that might be a clue to what else is going on. What have your doctors said about that? And can you describe it? Is the rash flat or raised, tiny bumpy, or big red blotches? all over? Is it itchy? (possibly that's what she means?) Does it change? It is possible to have multiple problems that start close together in time, but I'd first try to find a single explanation for all her symptoms. I didn't read your other posts. What did her Cunningham Panel show, and how soon after she first started having symptosm did you do it?

Hi SSoda, So sorry you had to go through this, and still are. I wouldn't worry about MS, but do trust your instincts and stay away from that MD who didn't even talk to your daughter and dismissed all you said. I had one of those as well. Maddening. I don't think that MS would create all the symptoms you describe. How frustrating that the infection took so long to treat, so many times you were dismissed. Only a quick reply, for it's late here. IgM antibodies are produced rapidly after an infection as a rapid-strike force, but they disappear within a few months. IgG antibodies are much more precisely specific to the virus/becterium so they take a few weeks to develop. However they typically multi-year or even life-long immunity to that virus (or strain). So if you are It means IgM+ IgG- early in an infection, (IgG antibodies not yet created) IgM+ IgG+ recent infection, or recent re-activation (say chickenpox, or HHV-6) IgM- IgG+ an infection in the past (with few controversial exceptions). If your daughter was IgM- IgG+ to HHV-6, then that doesn't sound like drug-induced reactivation either does it? And I'm too tired to think clearly about what else it might be, besides PANDAS from one or more infections, plus perhaps drug allergies. Perhaps somebody else will have ideas.

My DS17 is on Zithromax, but he has low IgA and gets skin infections easily. He's been flaring badly the last week and a few days ago -- after he complained of ice picks in his back after some falls in PE -- I looked at his back and found a couple of huge boils... as well as a few small zits. He luckily hasn't been getting acne along with his PANS (I thank the Abx), so it didn't even occur to me to check for skin infections. I've been treating the boils and today was a bit better. But tonight I discovered that his scalp is a mass of seborrheic dermatitis (think thick cradle cap, not dandruff) with bleeding chunks around the hairline. That's an inflammation as well, right? Could that actually be a factor in is PANS? He can't stand the sensation of moist skin when he's flaring, which is probably why the seborrhea. I am trying to figure out how to treat his scalp without getting him all wet. No way could he take a shower in the last 10 days -- and probably not in the next couple either. So what do I treat his scalp with? I know that it's caused by an oil-eating yeast + bad genes +/- bacterial infection.

I think you may be onto something. Especially given (a) this eosinophilia ( that this began after antibiotics © that she initially got better and then worse. I don't know the timing of DIHS after HHV-6, but it definitely exists. Don't know that it would cause regressive autism, but it's a huge inflammatory reaction, so in a PANS kid it certainly could. But a nasty drug allergy could also really mess up a PANS kid. Knowing very little, my alternative explanations are below. Questions: Are the antibodies to HHV-6 only IgG or also IgM? What was the timeline? I.e., how long since you started the antibiotics, that you saw got improvement, got a rash, got X, Y and Z symptoms? Did the doctor have any better explanation for your daughter's rash, eosinophilia and other symptoms? Just to play devil's advocate, here are alternative explanations: doctor never mentioned the HHV-6, because almost everyone has antibodies to it by adulthood, and often kids get sick without even showing symptoms. So if the antibodies were only IgG, it would be "unremarkable". Your daughter might have a drug allergy and also roseola and/or DIHS. Yes, you can ROFL, but it's good to trust your instincts as well as the MD. Here's what happened to my son: A few days after starting clindamycin he got red cheeks like he'd had with a Sulfa allergy, and then a bit of a rash. I called to ask about that, but DS's amazing doctor disagreed and diagnosed roseola. I grudgingly accepted that, but the he got worse, got a fever, and the presentation really reminded me of his Sulfa allergy. I took him back a couple of days later, and it turned out that I was right -- and so was the doctor.

So glad that you got through! She's such a good listener, as well as supportive and informative, I think you'll be glad you persisted. I take a few of her ideas with a grain of salt (esp. homeopathy - the scientist in me can't buy into that), but in general I'm impressed by her breadth and ideas. Hope you have a similar experience.

Can you write the name of the program, name of the practitioner(s) or other such identifying information so we can Google it? Would it work for mold allergies, I wonder. I can't figure out why DS gets these recurring multi-week flares. Could be testosterone, or infection exposure, or mold or ??? But he has other allergies as well, so I'd love to find that they are a big trigger.