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  1. Like
    bobh reacted to EAMom in Kiki Chang on antibiotics and PANS   
    Hey, I'm putting this article here b/c when I've searched for it recently it's been behind a paywall...but today it's not. So now it's here for safe keeping in case it becomes inaccessible again.  


    Antibiotics have a role in PANS even with no infection
    Publish date: February 9, 2017 By: M. Alexander Otto Clinical Psychiatry News     EXPERT ANALYSIS FROM THE PSYCHOPHARMACOLOGY UPDATE INSTITUTE
    SAN FRANCISCO – Antibiotics might help in pediatric acute-onset neuropsychiatric syndrome (PANS) even if there’s no apparent infection, according to Kiki Chang, MD, director of PANS research at Stanford (Calif.) University.
    first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared. Dr. Kiki Chang

    “We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry.

    PANS is a recently coined term for the sudden onset of obsessive compulsive disorder (OCD) within a few days of an infection, metabolic disturbance, or other inflammatory insult. Anxiety, mood problems, and tics are common. There might be severe food restriction – only eating white foods, for instance – that are not related to body image.

    PANS broadened the concept of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which was first described in 1998, although it’s been known for generations that acute streptococcus infections can lead to abrupt psychiatric symptoms.

    PANS is the topic of ongoing investigation, and Dr. Chang and many others are working to define the syndrome and its treatment, and trying especially to determine how PANS differs from typical OCD and other problems with more insidious onset. The idea is that inflammation in the patient’s brain, whatever the source, triggers an OCD mechanism in susceptible patients. As a concept, “we believe it’s true,” he said.

    For now, it’s best to refer suspected cases to one of several academic PANS programs in the United States, as diagnosis and treatment isn’t ready for general practice, he said.

    If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps.

    Cognitive behavioral therapy and family support also helps. As for psychotropic medication, “we often use them, but they rarely take away the acute symptoms,” and PANS children seem especially sensitive to side effects. “I’ve seen many of them become manic on SSRIs. I’ve seen some of them have very strong [extrapyramidal symptoms] with atypical antipsychotics. You have to be very careful; we don’t have any good studies” of psychiatric drugs in this population, he said.

    At the moment, PANS seems to be more common in boys than girls, and most patients have a relapsing/remitting course and a family history of autoimmune disease. Suicidal and homicidal ideation can be part of the condition.

    Dr. Chang believes PANS could be part of the overall increase in autoimmune disease and psychiatric disorders in children over the past few decades.

    “We have more kids who have special needs than ever before,” large, objective increases in bipolar, autism, and other psychiatric problems, as well as increases in psoriasis, nut allergies, and other autoimmune issues. “What causes it is harder to say, but there has been a change for sure in kids and their immune system development that does affect the brain, and has probably led to more neuropsychiatric disturbances,” he said.

    “No one talks about it. Everyone thinks that it’s some sort of pharmaceutical industry conspiracy” to sell more drugs by increasing scrutiny of children. “I think it’s caused by something in the environment interacting with genetics,” whether it’s infections, toxins, or something else. “We don’t know. Any kind of inflammation can be a trigger” and “we know inflammation” is key to “many psychiatric symptoms. I do think there’s something going on with kids over the last 30 years,” he said.

    Dr. Chang is a consultant for and/or has received research support from Bristol-Myers Squibb, Lilly, Merck, GlaxoSmithKline, and other companies.
  2. Like
    bobh got a reaction from Hitman3161 in Psychosis or PANDAS/PANS/OCD   
    I too agree that pursuing a PANDAS/PANS treatment protocol would be appropriate.  There seems to be a wide range of symptoms to PANS, and my own experience is that it can morph a lot at times.  It is (to me) remarkable that there is as much similarity as there is amongst PANS patients, considering how complex the brain and its reaction could be when bombarded with anti-neuronal antibodies.
    I am presuming that you do have PANS, because the antibiotics helped.  According to http://www.medicalnewstoday.com/articles/248159.php, "Psychosis is not a disease in its own right; it is a symptom."  So if it is in your case not a symptom of PANDAS or PANS, then it would be from some other disorder that perhaps is unknown.
    My argument for sticking with a PANS treatment is statistical, but it's strong.  Take the disorders that you might be labelled with, and presume that they are distinctly separate and independent of each other.  For example, whatever other disorder could have caused the psychosis, and PANDAS.  They are likely both relatively rare.  To get them independently is like getting hit by lightning twice.  If they are really rare, it could be like getting hit by lightning on two different parts of your body at the same time.  Yes, its possible, but its not the first assumption that should be made.  The appropriate first assumption, is that all the seemingly disconnected symptoms are (most likely) caused by one source thing (one lightning strike) that causes a lot of complications (as an attack on the immune system might do especially when it morphs into an autoimmune disease).  That one complicated thing just manifests in various and different ways, and differently over time.  Only if that "one cause" assumption clearly fails should you move on to the much rarer possibility that you actually have 2 different root cause sources for your symptoms.

    It is this kind of argument that was made by Dr. William Benitz for the very first PANS patient at the Stanford PANS clinic.  He said “I have a rule of thumb for pediatric patients: They’re only allowed to have one disease at a time.  It’s not 100 percent true, but for a previously healthy 7-year-old to develop what appeared to be psychiatric and hematologic symptoms from two different, independent processes didn’t make sense. There had to be a unifying diagnosis.”  You could actually come up with what the "not 100" percentage is in your case if you know the incidence of the disease that caused the pyschosis.  If a 2nd independent disorder occurs for less than 1 in 100 people (likely, I would guess), then Dr. Benitz's statement would be true more than 99% of the time.  Why even expend your precious energy looking for another cause, first go with the 99%+ sure thing!
    If you are interested, you can see Dr. Benitz's quote and the full context of the severe and partly untypical PANS case he references in that quote here: https://med.stanford.edu/pans/news/brain-attack.html .
  3. Like
    bobh reacted to Cleopatra in Tics only PANDAS   
    My dd was on a weekly 500mg azith prophy protocol for awhile.
    When my dd had HORRIBLE tics (vocal, sniffing, throwing head back, blinking, etc.) 10,000x/day we swabbed her nose and found MRSA. Treated it with Bactrim and it vanished within 36 hours. Has come back with flares, but is finally under control (99.99% gone) after 5 years of ALL the available treatments.
  4. Like
    bobh reacted to Hitman3161 in All Serum tests so far negative! Please help, disheartened.   
    Thank you once Bob, that's very kind of you in light of the situation. Unfortunately, I don't have the familial support to truly rally the cause. I've tried so desperately hard to educate them, but they seem to be obsessed with physical markers more so than any concern for my set of symptoms - despite giving them plenty of information and the word of Dr K. They'd be much happier to write it out completely and continue to send me to psych - being reluctant to go the extra mile to confirm diagnosis. It's very frustrating when you find yourself talking to brick walls - that can drive you crazy! Obviously, being a student I rely heavily on them funding the necessary arrangements. At the very least they will talk to Dr K, it still doesn't help that the bloods continually test negative even if I was only able to test for the few available - not the whole breadth indicated. 
    At the moment, I am very congested! so hopefully a visit to the ENT will do good. Even when I mention to them the neurology reports indicating 'chronic' sinusitis, they dispute it on the grounds that I'm not pain. I certainly don't want this to be place to 'moan' or complain about my situation, but it is bad. I wasn't diagnosed with anything up until 18 whilst actively seeking professional opinion, before that my behaviour was seen as 'just bad, being lazy or not wanting to anything for myself'. 
    But before the mention of travel, they were very happy to accommodate the opinions and the need for antibiotics. So honestly, as hopeless, isolated and dysfunctional  as I feel at this point in time, hopefully Dr K can convince them the need for follow up. 
    Still, I would love to clear my sinuses and respond to the medication advised. I can't see much benefit from a system that has followed me with effect for several years now.
    If I do find myself traveling there for any reason I will give you let you know, it's always nice to meet family's and people who can share similar experiences. ASD, ADHD, OCD are my labels but they certainly can't tell you the story of my life in the way PANDAS can.
    Thanks once again. These next few months will probably be hard, but as for any and everyone on this board, all we can do is fight for our health and search for the answers that actually mean something.
  5. Like
    bobh got a reaction from saidie10 in DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!   
    Yes, we had severe OCD, then a couple of years of normalcy, and then an awful flare after some sickness.
  6. Like
    bobh got a reaction from Cind in Glutamate and Pandas   
    I don't pretend to understand it, but there seems to be a link between phosphatidylcholine and glutamate (where one inhibits some of the action of the other).  A search of this forum for posts with both these items comes up empty, so I am presuming that phosphatidylcholine as another possible antidote to "glutamate storms" has not been explored in this forum, though both are well-commented on separately.
    I mention only because our PANS son had an improvement on a high dose (3000mg/day) of phosphatidylcholine over the last several months.  We trialed on and off it several times, and I posted some discussion and our results at the end of an old thread here:   http://latitudes.org/forums/topic/18965-phosphatidylcholine/#comment-186762 .
  7. Like
    bobh reacted to kos_mom in Anyone have experience with Coxsackie Virus?   
    Coincidentally this post just came up on Dr. T's FB concerning what appears to be an adult with coxsackie. It seems to indicate antivirals could be helpful:
    "Got the best news EVER tonight!!! I was contacted by Dr. T. My labs show Mycoplasma consistent or chronic infection. Pneumococcal titers are high although I have never had the pneumonia vaccine??, There is persistent evidence of Coxasackie A titers which is rare in adults. This is a known trigger of PANS. Dr. T has a reasonable suspicion that...there was an active or chronic mycoplasma and/or coxsackie infection that was activated by the live nasal influenza vaccine. It can be treated with antivirals and antibiotics which I will start tomorrow. I am so appreciative to Dr. T for his expertise and persistence. All these tests could have been done while at Upstate University Hospital by my team of neurologists and movement specialist through Upstate University. Their response is " I don't really buy into PANS". Their recommendations are for me to establishe care with a psychiatrist/psychologist as they may possibly by a psyhogenic disorder. ARE YOU KIDDING ME!!!! Maybe if Suny upstate did the appropriate testing they would have known the cause of my symptoms. Thank you Dr. T for thinking outside the box, giving me hope, and reassuring myself that I am not crazy!!! The movement disorder specialist and I had a heated debate about PANS and he said... " If this Dr. T can cure you I want you to walk into my office and tell me I am wrong" I indeed will do this. When the medical profession does not have answers for your ailments they are too quick to say a psychogenic etiology may be the cause!!! Thank you for all your prayers!!"
    Ko's Mom
  8. Like
    bobh reacted to MomWithOCDSon in Question about Probiotics   
    Like many other things, the whole streptococcus in probiotics issue is one for which there are multiple -- and sometimes contrary -- opinions.  If you search here on the forum for "probiotics" threads, you'll see that some doctors have advised staying away from all strep strains, and others have argued that those strains, in those formats, have no negative impact.
    If you've been sensitive in the past, might it not be good to start out with a single strain probiotic, and then add another single-strain and so on, so that you can monitor what, if anything, seems to be problematic rather than helpful?  I agree that a good-quality multi-strain probiotic is ideal, but it might be tough to discern the wheat from the chaff in your case.   Many folks here have used Klaire products, and we like the Renew Life line.
    I would search this forum for the probiotics threads, however; there's a lot of information there, including research papers, personal experiences dating back some time among the participants here, etc.
    Good luck!
  9. Like
    bobh reacted to maybaby in PANDAS and Autism Research Videos   
    I was recently listening to some of the Autism One videos from last week's conference, and wanted to pass along the link for those interested. My DD has PANS/ADHD/Anxiety diagnoses. Although I don't have a autistic child, I feel a lot of the speakers at the yearly Austin One conference have important messages that can be applied to a variety of childhood disorders. You may want to listen to Dr. Rosario's Trifletti's video titled "Rosario Trifiletti - PANDAS/PANS as a framework for understanding vaccine reactions and autism" (the video is located under the Saturday list of seminar speakers).
    My daughter has been taking the BRAVO probiotic for two years, and it has been, by far, the best thing we've done for her to help build up her immune system. The inventor of the probiotic, Dr. Marco Ruggiero, is also a speaker at the Autism conference. 
    I hope this helps anyone who is interested in doing some research!
  10. Like
    bobh got a reaction from Rudy6897 in MTHFR gene impact on OCD/PANDAS   
    To your pledge to "improve my quality of life by exploring all measures possible", and for the sake of those golden years:

    I consider it wildly "lucky" that you have a psychiatrist that wants to try antibiotic (abx) therapy.  I say lucky only that it is one of those "measures possible".

    On the one hand, we have Dr. Trifiletti in New Jersey, who has suggested abx to a ticcing parent of a PANDAS child he was treating, and finding it resolved the tics in that middle-aged person.

    On the other hand, we have Dr. Miroslav Kovacevic who has said "ultimately, all abx eventually fail", as if to say, it works well when caught really early, but not so well after a long time untreated.
    If it were me, I would first trial a good probiotic for at least a week (to know it doesn't make it worse), and then I would go for the abx.  You don't know for sure until you try.
  11. Like
    bobh reacted to DreamingPanda in How long before we can expect to see improvement from steroid burst?   
    Hi July,
    40 mg seems like it could be a bit low for a burst for a 16 y/o.  When I did my first steroid burst, it was 50 mg for five days, and I weighed 99 lbs.  I’ve also done steroid tapers, and those usually started at 60 mg.  Every one is different, though.
    That first time I did a five-day burst, I saw improvement on the third day.  I’ve had other flares when it took a few days, and still others when I improved within a day on steroids.  There have also been a few when the steroids didn’t help at all, but that was when I had infections that I didn’t know about.
    If there’s an active infection, it’s entirely possible that the steroids will either not work, or they’ll make him worse.  Have you looked into Lyme disease through Igenex testing yet?  It’s so important to treat Lyme if it’s there—otherwise, a lot of the PANS treatments won’t have their full effect.  Does he still have his tonsils/adenoids?  Infections can hide there, too, and antibiotics won’t reach them.
  12. Like
    bobh reacted to BrooklynMom in IVIG after Negative Cunningham Panel   
    My son has been suffering with PANS/PANDAS since age 8.  He is now 14. He was diagnosed at age 11 by a PANDAS doctor after a few years of having standard mental health treatment without success. After two years of antibiotics he received IVIG and six week post-IVIG became significantly worse. Our doctor had never seen this before. We called Dr. K. in Chicago who said my son probably still had strep in his tonsils. We were unable to get a doctor to remove his tonsils based on the PANDAS diagnosis alone. One ENT gave him clindamycin which has a history of getting into tonsils better. His PANDAS doctor then ordered the Cunninham Panel which was negative. My son did not want to participate in their study. We were left with returning to conventional neurology for the tourette symptoms and psychiatry for the OCD. A new neurologist/psychiatrist (a conventional mainstream doctor) heard our story and thought we should try the IVIG again. We did a second round and my son improved greatly then after the third round he's like his old self (as much as I can remember him after all these years.) It feels like a miracle to me.  Although he's not 100% better it's remarkable enough for everyone in his life to notice. I'm not sure what helped this time. Maybe the clindamycin before the IVIG?
    Do not give up based on a Cunningham Panel. It is still experimental. I was crying when the doctor told me it was negative and IVIG would not work for my son. I was certain it was PANDAS. They (Cunningham) are still looking for markers and the current panel does not cover all possible markers which is why they ask families to participate in the research to find new markers. If I had turned down the offer for more IVIG based on the other doctor's recommendation from the results of the Cunningham Panel my son would not be on his way back to wholeness today. His tics are almost completely gone after years of severe tics and anxiety is very low. Almost normal.
    Of course after years of being in the grips of PANDAS my son has much catching up to do with peers. We still have much healing to do. I'm not sure he will ever catch up but at least now he has a chance.
    Good luck to everyone.
  13. Like
    bobh got a reaction from mama4 in What is this??pandas, herx or abx side effect?   
    I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx.  I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away.
    My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take.  For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure).
    Do let us know how it goes.
  14. Like
    bobh got a reaction from tu4four in Autoimmune Encephalitis   
    Your story is heartbreaking - I am so sorry for all of the stress you are under.
    I assume that you are posting here because of a previous diagnosis or suspicion of PANDAS or PANS.  Just in case you haven't seen the workup recommended at pandas physicians network, scroll down to section "III Workup" at this link: https://www.pandasppn.org/seeingyourfirstchild/ .  This is not a really long list (like for example, Dr. T's), but a very basic one, and one that a doctor not expert in PANDAS/PANS could respect on account of the board of expert doctors behind this website.  At any rate, beyond the basic checks for strep, there is a recommendation to check for heavy metals.  That part is worded in a funny way - it's called poisoning, but it's also called a non-infectious trigger.  At any rate, I know of a child that had excess mercury in her blood (and hair), and her PANS symptoms did actually improve greatly when they got the mercury level down.  It really does seem to act like a trigger.  I have heard aluminum as another that possible trigger that you could consider requesting to be checked.
    Have you ever chased yeast as a trigger?
    For your son, though zith is good, you might consider getting a different abx, as recommended (after 14 days if no improvement) on the second page of this link: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf .
  15. Like
    bobh reacted to Plum99 in School taking child on class trip   
    I'm a teacher.  I've gone on class trips with different schools.  I have never worked where the medication policy was anything other than the teacher administering medication to the child.  We always had to watch the child take the medication, initial each time medication was given- this included vitamins.  Your school must have a more relaxed policy. Personally, I wouldn't like it.  Not all children make good choices, or are able to handle the responsibility.  Let them be responsible for getting their homework assignments, asking the teacher for help, and working on relationships with peers.  Medication? I don't really think that's something that should be taken so lightly by the principal.
  16. Like
    bobh reacted to MomWithOCDSon in School taking child on class trip   
    My first thought is, did you ask your DS why his medication was still in the pill box?  What did he say?
    I don't know what the principal means by "appropriate times," but I would wonder if your DS didn't want to take the pills on a regular basis in front of his friends/classmates; if, like my kid, he wanted to be "normal" and "like everybody else" for those 6 days, maybe?
    It's hard to know what the group dynamics were, what the housing/rooming situation was, etc., but I guess I could understand that, at this age, the chaperones didn't feel as though it was appropriate for them to hover over your DS to ensure he took his medication.  You trusted him with the pill box, rather than a chaperone, so perhaps they took that as an indication that you more or less trusted him to take his medication as appropriate, and they took a similar path?
    I would talk with your DS about it and perhaps brainstorm some strategies for the next trip, either so that he doesn't forget (whether or not there's an adult present to remind him), or so that he feels like he can take whatever he needs to take without "making a spectacle" of himself.  When my DS was a little older (9th grade) and out of town on a school robotics competition trip, we talked about how he would take his meds first thing in the morning, with a glass of water from the hotel room tap, before he even left the room for breakfast or whatever was on the schedule.  That way, he had at least a little privacy and didn't have to haul the meds around with him, or run the risk of forgetting.  Another idea might be to set up reminders on his phone so that he gets beeped or whatever to remind him, if he's the forgetful type.
    Otherwise, for the next trip, you might request a one-on-one conversation with the head chaperone and ask, specifically, that they find a moment to pull your DS aside, outside the hearing and/or eyes of his peers, and ensure that he's on schedule with whatever he's supposed to be taking.
  17. Like
    bobh reacted to mama4 in Discover Magazine Pandas article online link   
    I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share.
  18. Like
    bobh got a reaction from MomWithOCDSon in Treating OCD with Minocyline   
    Nancy, you are right - there is always going to be variability in the subjects of any study, and that is often difficult to deal with.
    I was specifically annoyed that they were discussing OCD and abx (minocycline) as if this was amazing new ground, without even whispering the word PANDAS in this article (i.e. the first article posted in this thread). I don't believe the researchers themselves could have missed running across PANDAS in their background research, so I concluded that either they didn't believe in PANDAS, or didn't want to get involved something they thought was a hot debate, or the media that published this story took out any reference they made to PANDAS for similar reasons. Whichever it is, all those reasons annoy me.
    But further to your comment, when significant observational (i.e. not placebo controlled) studies are done, considerable time and effort is spent removing the effect of what they call "confounders". They can adjust results based on known attributes of subsets of the group. This can only be done really well for large sets of data, but they had 80 subjects here. Its one thing to decide to not do anything about a subgroup that likely makes up about 25% of your patients because you don't believe you have enough numbers (I don't think that is so, by the way), but its quite another thing to not acknowledge it at all, especially when what is being done elsewhere for that subgroup is so related to your "new" research (effect of abx for OCD). This point is on top of all the other (i.e. immunomodulatory) effects of abx you point out - that too has been studied before this work was done.
  19. Like
    bobh reacted to MomWithOCDSon in Opinion on Research   
    DC -- I think this research, like much of the research going on these days with respect to mental "illness," its potential geneses and innovative treatments is great, and promising.
    Unfortunately, however, our psych has frequently reminded us as a family that research is just that: research. And the road from research to peer-reviewed concensus tends to be a long one, let alone the road from research to on-label treatment options. Research, and even clinical trials, don't have the same standard of care as a practicing physician who's agreed to oversee one's physical or mental health care, so there's a gap there in what one sees in current research progress and what many/most physicians are ready to put into regular practice.
    That said, we've benefitted from some off-label treatments when the psych or docs felt that the research thus far presented, and still underway, was adequately compelling, so I don't think the door is shut and locked in terms of some new treatment options coming to fruition short of full FDA approval. It takes an intellectually curious doctor/care-giver, though, to stick his/her neck out.
  20. Like
    bobh reacted to confusedmom in Keflex as prophylactic?   
    My almost 8 year old has been taking Keflex prophylactically since January. He is taking 250mg 2x's per day. I have been told by the doctor that it has a short half life and that is why you need the second dose. I was even told to give the second dose earlier if child was going to be doing after school events, because it will have worn off after 8 hours. Hope this helps.
  21. Like
    bobh got a reaction from labmom in Pandas or Allergies?   
    If an allergy is causing pans symptoms, it should still be classified as PANS. This I get from the figure below, which comes from http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ :

    In the non-infectious triggers of the lower branch is environmental factors (which can be allergies).

    Although you should cut out wheat regardless of whether it is a wheat allergy or whether it is PANS, there is (in my mind) a significant difference between allergy and PANS, besides the typical symptoms of each. PANS seems to develop other triggers over time. Some other time, it could be strep, or some other bug that the child encounters. It seems like you have already seen that. But a food allergy could also be prompting the immune system and also causing a PANS flare. This is why some PANS kids improve when gluten is eliminated.

    I wonder if "daughter has never had any kind of classic allergy symptoms or reactions" is just like the PANDAS child that flares with strep, but doesn't seem to have a particularly red or sore throat, or any other symptoms of strep.
  22. Like
    bobh reacted to LNN in PANDAS and LYME in siblings   
    Given your kids' histories, I think it's very reasonable to suspect that there's a common infection, as well as possible genetics, that link your family's health issues. It could be Lyme (either congenital or from all of you being exposed during a shared hike or trip to an endemic area) or mycoplasma, which is highly contagious, or both, or these plus some other shared infection.
    It can also be that some of the mutations in the genes your family shares are contributing to the way your bodies are handling the strain.
    The first place I'd put my money is on seeing an LLMD (lyme literate MD). Initial visits are costly, and most don't take insurance, so you have to pay out of pocket and then submit your own claim for hopefully partial reimbursement. But these doctors specialize in chronic infectious diseases that can affect a variety of systems (endocrine, immune, gastro, neurological, etc). And they tend to be good at seeing things from an interconnected perspective instead of specialists who only look at one body system in relative isolation. They're good problem solvers.
    If finding or seeing an LLMD isn't something you can do quickly because of where you live, then I'd at least see if you can get Lyme tests for your 12 and 6 yr olds, preferably from Igenex Labs, as they test for lyme-specific bands that other labs don't test for, and can potentially catch cases other labs would miss.
    Finally, you might consider testing thru 23andMe, which consists of getting your kids to spit into a vial. You then get genetic data that can help you understand how their bodies might be struggling to make and balance neurotransmitters. Your 6 yr old might benefit from some supplements like niacinamide (flush-free niacin aka Vitamin B3), which for some people with genetic COMT mutations, can help them process/degrade adrenaline better and help them calm down more quickly (less rage/meanness).
    Both 23andMe and Igenex used to have special pricing for testing multiple family members at once. You can check to see if that's still the case.
    Follow your instincts. It seems very possible that there's a common link. Good luck!
  23. Like
    bobh reacted to MomWithOCDSon in To short treatment with antibiotics?   
    I would refer you to Dr. Swedo's research out of the NIMH, but I believe she has documented and extended temporal relationship (longer time period between exposure and bloom or rebloom of symptoms) with subsequent strep infections. In other words, as I recall hearing her speak at a conference, the first strep infection may inspire psychiatric symptomology fairly quickly (within days or weeks). But the more repeated infections and/or exposures, the more extended the timeline tends to become so that it becomes somewhat more difficult to maintain the temporal evidence.
  24. Like
    bobh reacted to BrooklynMom in homeschooling/schoolwork and pandas   
    I started to homeschool my son about a year and a half into PANDAS. I didn't know what was wrong but I knew he had seriously declined in school and needed to be home. The first year was crazy. He would run and hide in the closet if I asked him to do any math. He insisted he didn't know how to add or subtract multi-digit number even though I had been doing homework with him for years and knew he had been doing it since K. I was confused. That year I mostly "unschooled". He picked topics and we pursued those topics. We spent months reading about the civil war and watching videos on it. We took a trip to Philly and learned about Ben Franklin. We did little math. We only did math related to other studies and what he felt comfortable with. I let him tell me what he was capable of. He is much better now but still struggles with math and tics and concentration. He is in eighth and still homeschooling.
  25. Like
    bobh reacted to NYCMom in Short Poll for PANDAS/PANS Mothers   
    As a former medical researcher I totally understand. Looking forward to the results and explanation, although you're going to need a lot more responses
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