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MomWithOCDSon

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  1. Like
    MomWithOCDSon reacted to SurfMom in Diagnosed in 2012, Likely the Most Difficult Case Ever - Now Near Normal.   
    The obvious approach is to say exactly what you wrote: that you believe your son may be having neurological inflammation because of an autoimmune response based on a list of symptoms that you have documented.
    Then see what tests he suggests and allow him to make the diagnosis.
    Remember that there is an art and science to using the terminology that will ensure that your child gets the treatment needed that will also be covered by insurance.
    I was careful to allow each doctor to use "PANDAS" before I did. If they did not, then I didn't either. After all, a bruise is also called a contusion ;-). 
  2. Like
    MomWithOCDSon reacted to bobh in This is what I struggle with....   
    Unfortunately, there is no clear definitive biomarker for PANDAS, so blood results are just a guideline.
    Our son was also always a bit more anxious that our other kids, but we got a PANS diagnosis primarily because of an extreme ramp up of OCD symptoms after some (unknown) flu-like sickness when he was 9.  He actually had a bout of severe OCD at 6, that mostly went away months later.  We wish we had been tuned into PANDAS/PANS back then (because if caught early, it should be better), but we didn't learn until he was 9.
    So, you are in better shape than we are.  If unsure, Dr. T. might weigh the risk of giving him longer-than-normal trial of abx vs. having PANDAS untreated.  Catching this early is a good thing.  Having gone through all that we have, I would be more anxious about untreated PANDAS than about wasting the time and money you have spent on a possible dead end.
     
  3. Like
    MomWithOCDSon got a reaction from dasu in what is next best anti-inflammatory?   
    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all.  In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it.  After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief.  Great stuff!  We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  4. Thanks
    MomWithOCDSon got a reaction from bobh in Patholigical Demand Avoidance Syndrome   
    Personally, it sounds to me potentially like another instance of labeling a set of behaviors, rather than digging down into the genesis of the behavior.  School refusal and flat out avoidance of stressful (or to be more precise, potentially stressful) activities have been, in our experience, a classic presentation of high anxiety.  And if that high anxiety is the result of an autoimmune disorder, then you can slap any label you want on it, but that doesn't change what it is at its root.  If UK professionals are treating this "syndrome" to address the behaviors but aren't extending beyond that surface to address the underlying cause, the response is likely to be incomplete and without staying power, IMHO. 
  5. Like
    MomWithOCDSon reacted to libera in Patholigical Demand Avoidance Syndrome   
    I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause.   Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS.  Is PDA syndrome really  describing a manifestation of auto immune disorder?   I would say very possibly.
    Truthfully,  to me,  the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal.   Because not only do we battle in treating the auto immune disorder, we battle with its presentation.  And to me, the latter is actually the harder of the two battles.
    It is already tough to deal with the high anxiety/school refusal, but it is even worse when the prescribed strategies don't seem to work AT ALL.     But what they have determined with PDA syndrome is that normal strategies DO NOT WORK FOR THIS KIDS.  To me, this is huge!   This so correlates with our experience!  So now we might have some better ways to deal with the presentations!   Some insight on to what is really going on and HOW TO DEAL WITH IT!  In the UK, where the PDA syndrome diagnosis is widely accepted, there are actually schools to deal solely with children with PDA.  (But on the flip side, these kids may never get the real help for the root cause of their issues).
    I am currently reading Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, et al.
    Anyway, I just thought I would share . .  sorry about the weird spaces and punctuations but I am doing this without my glasses on, which really isn't the best idea.
     
  6. Like
    MomWithOCDSon got a reaction from kakrpa in OCD flare according to PANS "non-believers"   
    There are a couple of possible factors (if not infection or immune dysfunction based):
    1.  SSRI "poop-out" is real, unfortunately; you can find first-person accounts of it in forums and discussion groups all over the world, and I've seen it first hand in family members.  That said, just anecdotally, I think some are more prone to it than others.  Though the science is still not fully researched or documented, it seems to have something to do with the particular receptors that each SSRI affects; pretty much every SSRI has a different formulation that impacts different receptor sites (whether dopamine, serotonin, 5H-T, norepinephrine transporter receptors, for instance), even though there's typically some crossover among all of them.  At any rate, if the receptor sites become unresponsive, which they can do, then the med doesn't work as well.  Weight typically has little to do with SSRI dosage.
    2.  We had a psych (and she's actually somewhat versed in PANDAS/PANS and certainly doesn't dismiss it) note for us that a component of our DS's increased challenges at an older age, as compared to when he was younger, were a factor of the expanding "gap" between what were age-appropriate expectations for behavior and what his jumbled brain could manage for him at the time.  It's one thing for a 3 or 4 year old to melt down in public, but when a 12, 14 or even 18 year old can't manage all the stimuli coming in and melts down, it's a whole different animal!  So, even if nothing dramatic changes in terms of environment or demands, just the fact that she's getting older and so society, friends, outside world and maybe even you tend to expect more "self-management" of her, that's a kind of pressure all on its own that might result in increased anxiety.
    Sorry you're continuing to go through this; we've been there (a protracted "story"), so I know how frustrating and demoralizing it can be at points.  All I can say is that, in your shoes, I would probably first try to rule out any physical (infection or immune) component to the decline, and once having done that, maybe look into the mental health options available to try and improve the quality of your DD's life (and yours by extension).  I don't know if you've considered it, but there are now the genetic testing options available (like Genomind) that hone in on genetics and any mutations that may interfere with the effectiveness of various medications, including SSRIs.  That might be one route to pursue, particularly if the others aren't fruitful.
    All the best to you.
  7. Like
    MomWithOCDSon got a reaction from momslove in OCD flare according to PANS "non-believers"   
    There are a couple of possible factors (if not infection or immune dysfunction based):
    1.  SSRI "poop-out" is real, unfortunately; you can find first-person accounts of it in forums and discussion groups all over the world, and I've seen it first hand in family members.  That said, just anecdotally, I think some are more prone to it than others.  Though the science is still not fully researched or documented, it seems to have something to do with the particular receptors that each SSRI affects; pretty much every SSRI has a different formulation that impacts different receptor sites (whether dopamine, serotonin, 5H-T, norepinephrine transporter receptors, for instance), even though there's typically some crossover among all of them.  At any rate, if the receptor sites become unresponsive, which they can do, then the med doesn't work as well.  Weight typically has little to do with SSRI dosage.
    2.  We had a psych (and she's actually somewhat versed in PANDAS/PANS and certainly doesn't dismiss it) note for us that a component of our DS's increased challenges at an older age, as compared to when he was younger, were a factor of the expanding "gap" between what were age-appropriate expectations for behavior and what his jumbled brain could manage for him at the time.  It's one thing for a 3 or 4 year old to melt down in public, but when a 12, 14 or even 18 year old can't manage all the stimuli coming in and melts down, it's a whole different animal!  So, even if nothing dramatic changes in terms of environment or demands, just the fact that she's getting older and so society, friends, outside world and maybe even you tend to expect more "self-management" of her, that's a kind of pressure all on its own that might result in increased anxiety.
    Sorry you're continuing to go through this; we've been there (a protracted "story"), so I know how frustrating and demoralizing it can be at points.  All I can say is that, in your shoes, I would probably first try to rule out any physical (infection or immune) component to the decline, and once having done that, maybe look into the mental health options available to try and improve the quality of your DD's life (and yours by extension).  I don't know if you've considered it, but there are now the genetic testing options available (like Genomind) that hone in on genetics and any mutations that may interfere with the effectiveness of various medications, including SSRIs.  That might be one route to pursue, particularly if the others aren't fruitful.
    All the best to you.
  8. Like
    MomWithOCDSon got a reaction from bobh in 7 years of PANDAS   
    Oh, Ambersmommy!  I am so sorry to hear what you've been through and continue to go through.  We went through a multi-year PANDAS journey of our own, and I had many, many days when I had your same thoughts.  It is so tough, and with these really treatment-resistant cases, the feelings of helplessness and isolation are nearly as devastating and debilitating as the disease itself.
    I hear you on the destruction of your finances and the lifestyle you once had, too.  Are you alone in trying to handle all of this?  Do you have family or close friends or some sort of support system (a faith community)?  This forum helped me through a LOT over the years, but we are (mostly) distant and not physically there to hold your hand or rub your back or take your DD off your hands for a few hours to give you some respite.  Are there any charitable groups or local agencies that could take some of the weight off of your shoulders, if only for brief periods at a time?
    I won't launch into "have you tried this" or "have you tried that" here, as I don't think that's what you want or need to hear.  You feel you've exhausted your resources, it sounds like, so all of my thoughts/suggestions are leaning toward replenishing yourself.  I want to tell you not to give up, that there is hope and there may yet be healing, but also that if you empty yourself with no opportunity for refilling or tagging someone else to substitute in for you now and again, that's an unsustainable system.  I'm just hoping there's something between surrendering your DD to the state or surrendering your life to terminal dysfunction.
    Sending much light your way!
  9. Like
    MomWithOCDSon got a reaction from bobh in Help with meltdowns/mood lability   
    My son was older when PANDAs struck him (12), but we still saw lots of meltdowns, mood swings and generally age-inappropriate behavior.  I don't know about these being the result of a herx.  I attribute my DS's behavior during that period to just feeling overwhelmingly anxious and out of control...his executive functioning was basically nil, so all of the things that had previously come naturally to him and he could do well and with joy, were no longer available to him.  That was incredibly distressing and frustrating, so his emotions were constantly taking over and he'd melt into a puddle of dysfunction.  I might suggest the following:
    Eliminate all but the essential activities for a while so that he's not over-stimulated and/or expected to "handle himself" in as many stressful situations, even if they all were fine before; Try using anti-inflammatory and/or calming meds and/or supplements to help his brain "settle down" a little while the abx do their thing (ibuprofen, valerian root, etc.); To the extent possible, build lots of "breaks" into his day to allow him to rest and regroup as managing oneself under this level of stress is very tiring, emotionally, mentally and physically, so he's probably in need of some quiet breaks during which he's not expected to play with others, engage with others, etc.; While you make the preceding accommodations, don't entirely forego your family routine, age-appropriate expectations, etc.  Decide what non-negotiables you'll continue to enforce so that he knows there is still structure, support and boundaries even while he heals.  It will help him feel safe, secure and less out-of-control in the end. All the best to you, and good luck!
  10. Thanks
    MomWithOCDSon got a reaction from MountainMom in Help with meltdowns/mood lability   
    My son was older when PANDAs struck him (12), but we still saw lots of meltdowns, mood swings and generally age-inappropriate behavior.  I don't know about these being the result of a herx.  I attribute my DS's behavior during that period to just feeling overwhelmingly anxious and out of control...his executive functioning was basically nil, so all of the things that had previously come naturally to him and he could do well and with joy, were no longer available to him.  That was incredibly distressing and frustrating, so his emotions were constantly taking over and he'd melt into a puddle of dysfunction.  I might suggest the following:
    Eliminate all but the essential activities for a while so that he's not over-stimulated and/or expected to "handle himself" in as many stressful situations, even if they all were fine before; Try using anti-inflammatory and/or calming meds and/or supplements to help his brain "settle down" a little while the abx do their thing (ibuprofen, valerian root, etc.); To the extent possible, build lots of "breaks" into his day to allow him to rest and regroup as managing oneself under this level of stress is very tiring, emotionally, mentally and physically, so he's probably in need of some quiet breaks during which he's not expected to play with others, engage with others, etc.; While you make the preceding accommodations, don't entirely forego your family routine, age-appropriate expectations, etc.  Decide what non-negotiables you'll continue to enforce so that he knows there is still structure, support and boundaries even while he heals.  It will help him feel safe, secure and less out-of-control in the end. All the best to you, and good luck!
  11. Like
    MomWithOCDSon 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.
      aotto@frontlinemedcom.com
  12. Like
    MomWithOCDSon got a reaction from SuzanneR in Staring spells, zoning out   
    LIke many of your other symptoms, Hitman, yes, we can relate.  And yes, I believe your "zoning out" is PANDAS/PANs related.  My son used to do that almost constantly.  Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc.
    There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that.  My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him.
    Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders.
    Perhaps something like this might be a missing piece of your puzzle?  I would pursue glutamate modulation, whether via pharmacological or "natural" routes.
  13. Like
    MomWithOCDSon got a reaction from Hitman3161 in Life!   
    Hitman --
    I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported.  You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources.  It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally."
    I can say, "Hang in there!"  I can say, things WILL get better.  But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality.
    I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find.  I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress?  I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out:
    OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality.  Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy.  All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. 
    There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy.  But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness:  reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening?  Reclaim little pieces of your life, if you can, however small.  And then celebrate that return to some functionality, however brief or small a glimpse.  That'll give you something to build onto.
    And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment.
    I know it's a lot to ask of yourself.  Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents.  But he still had demands made upon him, and we still set some expectations.  Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents.  We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself.  Not fair.  Far from easy.  But you can do it!  I know you can!
    Wishing you all the best, and a giant, fighting spirit!
  14. Like
    MomWithOCDSon got a reaction from tj21 in Are tics a prerequisite for PANDAS?   
    Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required.  That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.).
    My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions.  But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation.
    Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.
  15. Like
    MomWithOCDSon got a reaction from Hitman3161 in Psychosis or PANDAS/PANS/OCD   
    Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped.  But I can offer this observation.
    My DS's primary PANDAS presentation was OCD.  When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description.  He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him.  Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality.  He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him.
    Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again.   But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior.
    I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior?  I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves.
    Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with.  I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis.  So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose?  Chances are there's some inflammation in the mix, at a minimum.  I say go for it!
    All the best to you.
  16. Like
    MomWithOCDSon got a reaction from tj21 in IVIG for untreated PANDAS   
    OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR.
    Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can.  We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience.  But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above.  I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions.
    Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc.  So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. 
    I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him.  So the psych meds were an important part of that for us.  If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers.  And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers.  Clearly, they don't.  As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!"
    All the best!
  17. Like
    MomWithOCDSon got a reaction from OCDandPANDASmama in IVIG for untreated PANDAS   
    Hi, and welcome!
    My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.
    We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.
    A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.
    2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.
    3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.
    And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.
    Hang in there, and all the best!  All is NOT lost!
  18. Like
    MomWithOCDSon got a reaction from jan251 in IVIG for untreated PANDAS   
    Hi, and welcome!
    My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.
    We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.
    A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.
    2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.
    3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.
    And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.
    Hang in there, and all the best!  All is NOT lost!
  19. Like
    MomWithOCDSon got a reaction from tj21 in IVIG for untreated PANDAS   
    Hi, and welcome!
    My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc.  That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics).  In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way.
    We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him.  As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences.  In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore.  Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment.
    A couple of things you noted I wanted to respond to, specifically:  1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"?  There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain.  Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically.  We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3.  We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment.
    2)  You mention seeking Lyme testing.  I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG.
    3)  While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools.  You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics.
    And 3), you have a concern about "irreversible brain damage."  As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years.  He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis.  But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors.  At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea.  So, "damage"?  I don't think so.  But a part of who he is?  Maybe.  Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him.  Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities.
    Hang in there, and all the best!  All is NOT lost!
  20. Like
    MomWithOCDSon reacted to kakrpa in Irrational loathing of something that others consider normal?   
    Wombat140 - yes, I've dealt with this too (especially fear of the color red, which is my favorite color)! If u can't go down the med route, I'd highly suggest treatment with a therapist trained in ERP (exposure response prevention).
  21. Like
    MomWithOCDSon got a reaction from Hitman3161 in Antibiotics!   
    Hitman -- Remind me where you're located...in the States?  Somewhere abroad?
    I suspect that the dose of and composition of the amoxicillin you've been given is going to fall short in terms of desired mental impacts.  Not only is the dosage low, but straight amoxicillin lacks the clavulanic acid adjunct that Augmentin includes (amoxicillin plus clav acid), and there has been research regarding the mental benefits of clav acid.
    Some PANDAS kids here (mine included) benefitted greatly from Augmentin 875 mg. or, even more so in our case, Augmentin XR which is an extended release formulation which comes in 1,000 mg. tablets.  The advantage of the XR may be that it stays active in the system longer given that cellulose component which allows it to distribute more slowly, but if I recall correctly, the straight Augmentin 875 mg. contains a higher clav acid component, which might be why your consult suggested this.  I know there's a thread or two here on the forum regarding this, so you might run a search for "clav acid" or something along those lines and see what you find.
    As for the gastro-intestinal impacts, yes, I think those will fade over time as your body adjusts to the addition of the abx.  I would add a probiotic or two, if you haven't already, to help repopulate your gut flora and keep things from getting off-kilter there.  This might be another vote for the XR formulation, too, since the entire dose won't hit your system at once.
    In terms of feeling the effects/impacts, it really does vary.  My son was entirely non-functional at the point that we finally got access to abx for him, and he was markedly improved within 48 hours of his first dose; however, again, he started at such an incredibly low point, almost anything would have been an improvement at the time.  In his case, return to full, up-to-speed cognitive function was a longer, slower process (sorry); the lift of the brain fog, improvement in executive functioning, return of clear "normal" speech patterns, etc. were a slow, gradual result.  In his case, I attribute that to the duration of time for which he suffered before we got meaningful help and the need for the inflammation to be halted and reduced, healing of the blood brain barrier (BBB), etc.  Why I think it likely that, given the right abx at the right dose, you are likely to "feel" better within a relatively short period of time (mood lifting), I suspect it will take a little longer for the brain fog to clear and your cognition to return in full.
    Sorry you're dealing with this but I wish you a speedy recovery!
  22. Like
    MomWithOCDSon got a reaction from ejh in Alternative Meds?   
    Wasswa --  You can get the non-hallucinogenic component (cannabodoil or CBD) in a tincture form; it can be placed in drops under your tongue, or put into empty gel caps and consumed.  Many families on some of the forums here (PANDAS/PANs primarily) have used it for addressing anxiety issues with their kids.  The CBD oil can be purchased via Amazon and other on-line outlets, and given as it doesn't contain THC, is legal to purchase pretty much anywhere.  Since you don't smoke and have not tried pot previously, this might be a good option to try and see if the CBD is helpful to you.
  23. Like
    MomWithOCDSon got a reaction from bobh 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!
  24. Like
    MomWithOCDSon got a reaction from mama4 in Glutamate and Pandas   
    Mama4 --
    If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard.  We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it.  My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics.
    I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive.  We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues.
    NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses.  It has been good for all of us, but yes, there are some who don't respond well to it.  Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS.
    I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others.  All the best to you as you work out the best path forward for your family.  I'm sure you'll find it.
  25. Like
    MomWithOCDSon reacted to jan251 in NEW PANS TREATMENT GUIDELINES   
    Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida)
    In press, Journal of Child & Adolescent Psychopharmacology  https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf
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