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Showing most liked content since 11/12/2017 in Posts

  1. 2 points
    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. 2 points
    dreamingpanda

    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.
  3. 1 point
    MomWithOCDSon

    Recovery Time

    I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery. At least, that's my long-term impression from participating here and other support groups/forums over the last several years. Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back." Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times. But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break. But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction. Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury. Good luck!
  4. 1 point
    bobh

    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: http://www.pandasnetwork.org/research-resources/us-providers/ 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.
  5. 1 point
    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.
  6. 1 point
    Zith and mino are known to be ototoxic (can increase hearing sensitivity issues). Have they helped the other pans symptoms? Maybe try an increase in NAC? A separate issue, but D3 makes my panda worse, so we don't use that.
  7. 1 point
    bobh

    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.
  8. 1 point
    MomWithOCDSon

    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.
  9. 1 point
    Sheila

    Does this look like a tic?

    Hi lbass, I apologize that I just noticed your post. Welcome to the Forums. I think it is very good that you planned to see a pediatric neurologist. Can you please tell us how that appointment turned out? What was the advice? The motions in the video are not typical tics but we are not qualified to judge what type of issue it may be caused by. Sometimes kids do an exaggerated motion to cover up a tic. Again, it is hard to know what is going on from the video. We are interested in learning more and knowing how your son is doing. Please do let us know.
  10. 1 point
    SurfMom

    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.
  11. 1 point
    gladiator16

    Does this look like a tic?

    I think it looks like a tic . My son has that sort of movement sometimes . Ive counted 10 different movements that my boy does all of which are slightly different . I hope I'm wrong xxx
  12. 1 point
    jan251

    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. 1 point
    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.
  14. 1 point
    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.
  15. 1 point
    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).
  16. 1 point
    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: http://columbia-lyme.org/patients/ld_chronic.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  17. 1 point
    Hi, My daughter is being treated by Kayleen and we like her very much. Feel free to pm me if you have specific questions. Heather


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