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  1. Like
    bobh reacted to MomWithOCDSon in Antibiotics during flare question   
    There are studies that speak to other properties of various antibiotics.  For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory.   And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own.
    There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.
  2. Like
    bobh reacted to MomWithOCDSon in Sensory Processing or PANDAs?   
    Kelly --
    I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response.  And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs.
    Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin.  Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline."  During PANDAs, he was alternately identified as "borderline" a number of things:  OCD, Asperger's, PDD-NOS, Sensory Processing Disorder.  You name it, the poor kid, at one point in time or another, wore a label for it.
    What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%.  One doctor even took steps to revise his file to remove the former ASD notation he'd made there.
    I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward.
    All the best!
  3. Like
    bobh got a reaction from DreamingPanda in Coimbra Vitamin D Protocol for PANS?   
    Great that you turned a corner - congrats!
  4. Thanks
    bobh reacted to SullysMom in Pandas was on New York news!   
    Here's the link....
  5. Like
    bobh got a reaction from ibcdbwc in Caught in a Loop   
    I agree with MomWithOCDSon that ERP when in the worst of PANS/PANDAS symptoms not only doesn't work, but is counter-productive.  It certainly has helped some people with OCD, so it might still be helpful when he is not as anxious - but that is not when you need the help the most.

    I am also sure that some ERP practioners will disagree with this kind of advice and point to very severe cases that they have helped.  But, they might be different if they don't have the PANS/PANDAS trigger.
  6. Thanks
    bobh reacted to DreamingPanda in Recovery Time   
    I agree that everyone is different.  So much depends on how old a person is, how severe, how long it's been untreated, and what kind of treatment they get.  And sometimes, there seems to be no rhyme or reason to how fast or slow one person recovers.
    In my experience, I was untreated for eight years, had my first IVIG at 19, and after another IVIG and a tonsillectomy, I'd say I made a full recovery over a year later.  I've since relapsed twice, but that's because I caught Lyme disease, which complicates things a great deal.
    From what I've observed in my own journey, it's very hard to give an accurate percentage of recovery, or to figure out when I've gotten all the way back to myself.  I don't know if I've ever been 100% symptom-free since I became ill eleven years ago.  I've stopped trying to assign a number to where I am in recovery, and I just gauge whether or not I'm able to live my life as I wish.  Ultimately, I think that's the best a lot of us can do. 
    For me, there's never been a day or even a month when I've suddenly realized everything was back to how it was before.  It usually seems to be a painfully slow process where I shed symptoms and regain my "self" so slowly that I might not even realize it's happening.  It's easy to over-analyze ever day, every tic, and every little compulsion, but the overall trajectory is what's most important.  There will be ups and downs and flares for pretty much everyone, but hopefully, the underlying trend is towards the positive.
    At my age and given how long this went untreated, it's possible I'll always have some minor symptoms.  But even if this is so, thanks to treatment, PANS hasn't stopped me from doing anything I've wanted to accomplish in my life.
    So hang in there! You might be in this for the long haul, and there may be a lot of ups and downs, but yes, your daughter can and will get better with the right treatment.
  7. Like
    bobh 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 ;-). 
  8. Like
    bobh got a reaction from tj21 in Muscle Twitches?   
    Sounds (from this distance) like tics.  My son had plenty of weird (choreiform) movements, but no real tics (in my opinion).
    Can you find a PANDAS/PANS expert in your area?  There is a list here:

    Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.
  9. Thanks
    bobh got a reaction from eacampbell67 in PANDAS - Hearing Sensitivity Treatments   
    We also got slightly worse on probiotics (well tested, on and off many times), and suspected worse on NAC (just from one try).

    You might try cutting some of the supplements out one by one and see any of them are a problem.  Interactions can also get really complicated when there are so many pills.
  10. Like
    bobh got a reaction from MomWithOCDSon 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.
  11. Like
    bobh reacted to SurfMom in Has anyone dealt with Catatonia?   
    Magilu, my child has presented very, very similarly to the original poster. Please let me know how I can help:
    Strep triggered autoimmune encephalitis is the umbrella diagnosis - informally PANDAS. Sub diagnoses include Sydenham's chorea, catatonia, OCD, etc. My daughter had a most severe case including TWO years of catatonia - sometimes even waxy catatonia. Her treatments included IVIG monthly, 6 mos rituximab (failed),  9 mos cytoxan (failed), finally after five years sucess and almost full remission with tociluzimab. 
    Her catatonia also involved anorexia, bed wetting, and even raging at times. I know that each of our kids presents differently, but I do have a lot of experience with catatonic symptoms. For two years she was either in bed or slumped over in a chair. I had to bathe her and at times even get her to the bathroom. It was devastating, but the good news is that she came back from a vitually vegetative state and starting college in January. 
    Meds (at different times) to address the catatonia was primarily Ativan (lorazepam) and risperidone. She improved slowly on these meds but it was the tociluzimab that brought her back to near normal after five years of all the symptoms your child had (and more) including  high DNase titers, etc. 
    If my child improved, you have every reason to belive your child will too! See my recent update post for more details on her recovery.
    You are more than welcome to PM me.
  12. Thanks
    bobh reacted to jan251 in Most Effectives Treatments for PANS/PANDAS   
    Daptomycin, mentioned in that second link, is an IV abx.  Dapsone is the oral version.  My understanding is that Horowitz has been treating lyme patients with oral Dapsone for a couple of years, in combination with high dose folic acid (the study says folic acid was used for the purpose of mitigating the small risk of potentially very dangerous side effects of Dapsone, but on his FB page he says it was, indeed, methylfolate, i.e. natural folate rather than synthetic folic acid).  He has a paper on it.  https://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.php?aid=7159
    From the anecdotes I've read, like anything else, it helps some and not others.  Personally, I'm very interested in the anti-inflammatory and immune modulatory effects of Dapsone in addition to its antibiotic qualities.

    For a lyme angle, there is an interesting discussion here http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/136190
  13. Thanks
    bobh reacted to MomWithOCDSon 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. 
  14. Thanks
    bobh got a reaction from eacampbell67 in Most Effectives Treatments for PANS/PANDAS   
    I would like to suggest that one "treatment option" is to not add too many things or make too many changes at once.  These kids can react so individually and differently, and a "throw everything but the kitchen sink" strategy can result in a confounding "who know what is causing what" situation.
    For example, in some (rare?) cases, vitamin D makes some kids worse.  That is even when they might be low on vitamin D in their blood - go figure (and some have went and figured, and have explanations for this kind of paradoxical thing).
    Somewhat less rare (in my humble opinion) but still rare, are kids that get worse on probiotics.  Our son was measurably worse (I keep track of daily soap use as a measure of his OCD) on many different probiotics.  Some kids react strongly to some probiotics, some parents mistake that (in my opinion) for herx, and some (such as my son) get mildly worse on probiotics.  And of course, many have no problem with probiotics.  But if you don't introduce them separately (i.e. have them on it for a week before abx), you won't know what is doing what.  You can also try to figure that out by removing things later.  There is more than one story of a mom that in desperation (when her child was not improving) took the child off everything - and the kid got better.  But again, you won't know what was the culprit unless you remove one at a time, wait and watch, add back in, wait and watch, remove again, wait and watch, remove another, wait and watch, etc.  It is a long road, and also a less-travelled path (because we can't be patient enough - we want a quick fix).
  15. Thanks
    bobh reacted to msimon3 in Most Effectives Treatments for PANS/PANDAS   
    If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters".  The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease.  You will need to make a decision and choose a side.  If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl.
    Here are some links that may be helpful:
  16. Like
    bobh reacted to MomWithOCDSon 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!
  17. Like
    bobh got a reaction from PANS-mom in PANDAS and LYME in siblings   
    I know of a couple families in my area where both or all 3 kids have PANS or PANDAS. I think that the number of families that there are like this is a very strong indication that there is a genetic susceptibility. That is not surprising for an autoimmune disorder.
  18. Like
    bobh reacted to MomWithOCDSon 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!
  19. Like
    bobh got a reaction from MarcP in Improvement on steroids = PANDAS?   
    I am not a doctor, but would say its probable you have PANDAS/PANS.

    If it were me or my child, I would not bother with the cunningham panel, but would invest time/effort/$ in finding any infectious disease that you may have (such as strep, lyme, mycoplasma, etc.).  Also have your tonsils and sinuses checked for infection.  There is a whole host of other things that can be done, this is just what I would do first.
  20. Like
    bobh reacted to ABdualPT in Separating PANS from Lyme/Bart   
    Our son had many,many of the same symptoms that you describe with your child. It was awful and I feel like he had these symptoms from about 4 years old. He is 9 now. It has been very hard on everyone, especially him, I can only imagine. We are 1 month post IVIG and I have my sweet, creative, fun, kind son back. I am not exaggerating. Emotional lability, aggressive, mean and oppositional behavior is gone. Insomnia and bed wetting and wetting his pants is gone. Tics are 90% gone, as is hyperactivity. If you have not tried IVIG, I highly recommend it and hope that it will help you as much as it has us. It is also part of the pans consortium guidelines released this year.
    Good Luck
  21. Like
    bobh reacted to sf_mom in Separating PANS from Lyme/Bart   
    PANS can be trigger by chronic Lyme and co-infections.  Are you still treating for Lyme?  Did you treat for any other co-infections?
    We have three children, all gestational Lyme and have been treating ongoing for last seven years.  Our older son was a clear PANS child.  Strep, MMR and virus all within three week period woke up a different child at 5 1/2 years old.  Younger twins had ASD and Asperger's presentation at 2 1/2 years old.  
    They are now 10, 10 and 13 years old.  You would never know of their prior diagnoses.  All are living normal lives.  Even our DD's learning disabilities have reversed.  Eye sight improved, etc. etc. etc. 
    They have had tons of intervention but are well. I would encourage you to revisit the chronic Lyme et al component to resolve PANS 
  22. Like
    bobh reacted to Hitman3161 in HELP!   
    Hi Bob,
    Thanks for your kind words of encouragement. Yes, I can gladly confirm a very positive response to clarithromycin - I've been taking it for roughly a week now, and have seen an almost spontaneous improvement. I will continue to update, and see the process through. I am due sinus surgery soon, and then the decision will arise as to whether or not I can finish treatment in Chicago. Obviously, the single biggest diagnostic factor was the response to the anti-inflammatory/immunomodulatory effects of the antibiotic, which is definitely an upshot!
  23. Like
    bobh reacted to jan251 in T&A viable before sinus surgery?!   
    The question of whether to do the T&A in the presence of a sinus infection is a question for the ENT performing the T&A.
    The more important question is whether you can do both the T&A and sinus surgeries together, as that would be preferred, as I understand it.  
    My kiddo had a T&A last spring and is now scheduled for sinus surgery with a new ENT.  The new doc is surprised and annoyed that the old ENT did not scan the sinuses before doing the T&A, because it should have been done in one surgery .  New doc felt he could tell just by looking at him that he was stuffed.  However, he is not infected, just has abnormal tissue in the nose blocking drainage (fix deviated septum, turbinoidectomy, ethmoidectomy).  I was surprised that he was surprised that this wasn't handled earlier.
  24. Like
    bobh got a reaction from Cind in Has Homeopathy worked?   
    My wife has used a few homeopathic remedies for our son, but I don't believe that they helped in any significant way.  In fact, when a non-believing (of PANDAS/PANS) doctor suggested our improvement on abx was placebo effect, my reply was "why didn't this kind of placebo effect happen with the homeopathic remedies we tried before the abx?"
  25. Like
    bobh reacted to lysia in Do symptoms change after puberty?   
    I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative  timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years.  I have no significant nor any life debilitating symptoms remaining of OCD whatsoever.  The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it.  No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries  and even regressions are just as any other  experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become.  (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same  
    Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q,  I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty".  When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really.  BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic  time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick   mom you are. I'm so SO happy she has you.  Just needed to respond.
    [[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every  pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery .  A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is  overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]].
    Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.
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