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  1. Yesterday
  2. ronime

    Tics or tourettes

    Hello Jonal, I did consider PANDAS and his neurologist did some blood test and he said PANDAS was ruled out. Right now he's doing great. I do see some OCD in him. He has to have things his way and he hates messed. Everything has to be in threes. Like he can't just have one of something, it has to be 3. I have to say good night to him 3 times etc, etc. They say sometimes kids with tics have ocd issues as well. Unfortunately it's a take it day by day thing . I pray a lot that's for sure. Hope the best for your little guy and will definitely keep you posted and please keep me posted as well!
  3. Chemar

    Please help - India

    Hello Ashly Sorry you have not yet had any responses, and for the struggles your son is going through. I know you mentioned you had strep titres done, but other microbes can also be implicated in PANS, so it's beneficial that you have also posted on the PANS/PANDAS board There is also a lot of info on our pinned threads both here on the TS/tics forum and on the PANS forum as well as the OCD forum, and lots more articles on the website https://latitudes.org/ We found magnesium very helpful for tics Oral supplements plus transdermal by Epsom Salts baths.I have a thread from years back on what helped my son, but do remember each situation is unique so there may be issues mine had that are different from your son's https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I will try to check back later to post more or answer any questions you may have. My best to you.
  4. Last week
  5. lordchallen

    Does PANDAS always have OCD and tics?

    When I was young, I used to take apart old computers, turn them on, and then watch what happened as I took my ground probe and touched different circuits. I could get all sorts of colorful patterns on the screen, but oddly, never the same pattern twice. I think PANDAS is a little like that. The immune system goes crazy and generally in a predictable way. But it's also different with everyone and even within the same person, it changes. I know my daughter has pandas, but right now, I wouldn't say that she is really OCD. She has been really bad in the past, but right now, it doesn't hamper us too much. To me, most mental issues come down to identity. If something in my daughter's day implies that she is stupid or fat, she gets super distressed, even suicidal, filled with rage, and then depression. This is tricky because kids aren't dumb. If you do too much for them, they think they are stupid and that can trigger a downward spiral. But, if you don't do enough, or imply that they need to do more, it can trigger that they are not loved, and BOOM. I think, because of the increased sensitivity because of the over-active brains stuff, destructive mental loops can be very harsh on these kids. I try to set rules that are "necessary" and be pretty lax on other stuff. My daughter likes to change clothes 10x a day, then complain there isn't anything to wear. Convincing she that wearing something twice, if worn for a short time is OK, has been tough, but laundry is once a week. She has to work within that. She doesn't like it, but she doesn't freak out anymore. I don't lie to my kid, but I think of things to say that can build her self esteem back up. Getting her to realize that she WILL get her feelings hurt and need to continue on has been tough. Just today, some off handed put down from her cyber school teacher had her in a tizzy for 15 minutes. But, it was only 15 minutes and not 6 hours (or even days) like it has been in the past. Suicidal feelings are actually confused survival instincts. When the consciousness feels like it has changed too much from what it was, or has been rejected by those it loves, it wants to hit the reset button, (assuming its self immortal (which is another discussion.)) So, the suicidal expressions can really require some quick reassurances that you still love them and even if this stuff is really crazy, you will always love them. It can seem like you are carrying a lot of their personal responsibility for self preservation, but having gone through this, that is something that you can teach later.
  6. jan251

    Cunningham Panel value

    The Cunningham results (high anti-tubulin) confirmed our inclination to continue with HD IVIg in the hope of treating autoimmunity, "resetting" the immune system. Apparently anti-tubulin is associated with demyelination. However, that result was three years into PANDAS. The first result was only high CamKII. My understanding is that this is a common change over time, CamKII falls (it fell a bit from the high result when we ran the Cunningham 6 months into PANDAS, but not all the way back to normal) as some of the others in the panel increase.
  7. IBUProfen is sort of like a sponge to certain inflammatory agents of the body. There is a group of enzymes called Cytochrome P450 which IBUProfen tries to deplete. P450 is sort of like the ninja squad of the immune system. So, IBU soaks up these inflammatory agents and that keeps the inflammation down. Of course, the body tries to maintain a level of these agents, especially when needed. There is no data that I know of that says that IBU stops working over time. Perhaps the body tries to adapt and create more, but I haven't read anything about them. As far as short term, IBUProfen only lasts about 4-8 hours. When I would have bad flare ups, I would take about 800mg (4 tabs) once, and then be good for a while. My daughter is on 200mg 3 times a day. It seems to affect her moods for the better.
  8. lordchallen

    what was the trigger?

    IMHO, abx cannot help when triggered by a vaccine. The problem is in the immune system, not the germs. The immune system is freaking out because it cannot detox the offending substance. Abx will not that help. When the problem is triggered by strep, then sometimes the abx can help by killing the bug, however, in some cases, the immune system cannot expel the dead bugs and they might as well be alive and well, sometimes even worse. Because this is directly related to the immune system, everyone is different. But if someone gets worse after taking the abx, chances are the body cannot detox the dead germs. Learning detox techniques, like epsom salt baths, and other creative methods can help. It's not a cure, but it can assist in the detoxing of the body, which is why the immune is triggered in the first place.
  9. Thanks so much for your inputs. Is the test for mycoplasma pneumoniae called something specific? Or do we just ask for testing for mycoplasma pneumoniae? Also, he had it mid May and the onset/ exacerbation was not until Sept - you think the infection could go back a few months like that. Would really appreciate your thoughts! Thanks again!
  10. maybaby

    Cunningham Panel value

    I struggle with the Cunningham Panel test as well. After years of doing other blood work tests (strep, lyme, mico, etc.) and getting mixed results, I did the Cunningham Panel test for my DD (12) last year. She did come back elevated on the Anti-Tubulin and CAMK ranges, but nothing changed in her treatment approach with my PANDAS doctor (who is a psychiatrist who treats PANS/PANDAS). Since we don't really know the exact infection that caused the elevated ranges, we're still trying various supplements, antibiotics and herbs to tackle it. My PANDAS doctor has never indicated that certain ranges on the test determine specific treatment options. I haven't even told my daughter's pediatrician about the Cunningham Panel test b/c she does not believe in PANDAS and feels the PANDAS doctor I'm seeing is not very credible. I'd be curious if other people out there who see very reputable PANDAS doctors at hospitals have any input here.
  11. beeskneesmommy

    ABGA testing for a 6 yr old

    This testing is not a bad idea and could yield more info, but with the respiratory history, I would have him tested for Mycoplasma Pneumonae ASAP. This is a known PANDAS/PANS trigger.
  12. Dear friends I wanted to check if clonidine can make OCD symptoms worse? Our son 6 yr old had an acute onset of tics and not knowing what to do we went ahead with .5 mg clonidine at night for 10 days. During this time his OCD symptoms and nightmares worsened quite a bit. If I look back there were some before the acute onset as well. We stopped clonidine. Symptoms reduced although tics came back. We followed up with sessions with psychologist as well. Anybody else seen any connection like this? Thx much, Ashly
  13. Hi there Our paediatric nurologist has suggested Antibasal Ganglia Antibodies test for out DS who is 6 years old. His strep throat culture and ASO came negative. However he had a sudden onset of tics and OCD ( at least I feel it was sudden) in Sept 18. He has always had severe cough cold and viral infection issues. He also had a pneumonia in May 2018 and was treated with antibiotics biotics. He also had cough and cold going when the bout happened and when first time we noticed tics and OCD symptoms ( mainly intrusive thoughts - fear of witches, over apologizing) etc. in Sept 18. Do you think it's worth doing this test - has anyone else done it ? Thanks a ton Ashly
  14. This is purely anecdotal, and I have no medical training, BUT...it has been our experience (and I've seen it with some other families, as well, for whom strep was a long-term factor and not quickly caught and eliminated) that a single "round" of any antibiotic is unlikely to knock it out entirely. Whether it's because strep can cloak itself in biofilms and propogate in sort of a stealth mode, undetected, or whether it's because it engages in some "molecular mimicry" (as described by Dr. Cunningham), exchanging genetic material within the bodies of susceptible populations, it seems as though if you've been walking around with it for a while -- let alone years -- 30 days of even the strongest antibiotic is not going to be up to the task. If they're willing to renew the prescription so long as you're experiencing positive results, then that might be a workable answer.
  15. Thanks for the replies. The Dr is suggesting a round of Clindamycin....? Not sure
  16. ashly

    Please help - India

    Sorry to be so impatient, but any inputs at all on these pointers? Would greatly appreciate...thanks so much!
  17. I had the same issue. My son and I followed each other up and down thru strep and high titres. It's very likely I also had PANDAS as a child. Our specialist put me on a long term dose of augmentin (my son was already on augmentin and azith) I took it for about 3 months and it finally knocked it out of me. Very clean and careful living kept things at bay. I got strep once or twice afterward, but was able to kill it with regular 10 days of Augmentin. Once we got it out of me, things got better. It was not the whole fix, my son still had to do HD IVig, and we implemented a few other important interventions, but we beat PANDAS back.
  18. Your situation sounds quite similar to mine and my son's. We've been past it now for a number of years, so there may be some newer/better protocols out there (as momonmission mentioned above), but I will tell you what worked for us. I also believe I had PANDAs as a kid and took it into my early adult life with me; then my son developed it but we couldn't get a proper diagnosis for years; he was 3 when the ear infections and anxious behaviors began, and we limped along with Band-Aid fixes and ineffective treatments until he went off the deep end at age 12. That's when we found PANDAs and real treatment. We took long-term Augmentin XR (extended release), 2,000 mg. daily, for nearly two years. We combined that with mixed-strain probiotics, once-weekly bentonite clay "detox/gut sweep" and n-acetylcysteine (NAC), which is supposed to be helpful as a biofilm buster. We used (and still use, to some extent) a number of other vitamins and supplements, as well: omegas, B6, zinc, etc. As time went on, we became more and more convinced that our son had some strep colonies hiding out in his sinuses (he'd had chronic ear infections as a toddler and upper respiratory issues for most of his life, up through the PANDAs). This combination appears to have done the trick in his case, but it's not a quick fix. Rather, it's a long-term protocol but one that seems to have held him for the long-term. We ceased the abx after about 20 months (he was 14 at the time) and continued with some supplements for the next 4+ years. He's not had strep since (knock on wood), nor has he had any significant or long-lasting setbacks behaviorally. He's now 22 and getting ready to graduate with a Master's degree and head out into the work world. And my issues seem to have settled, as well, though I suppose you could put some of that on getting older and hopefully a little wiser! ;-) All the best to you!
  19. Hi, you should probably look up the Byron White formula for strep. It sounds like you have Strep in your tissues/blood and need to cleanse your blood. Antibiotics won't get it out of your or your son's body. I just recently learned this as I tested positive for strep as did my 10 y/o son PANS and have been detoxing both of us since Sept. We've both experienced rashes and other symptoms as the virus' are dying off so I know its working. Also my son is doing much better in day to day life.
  20. Hi, My 3 year old is a PANDAS kid with all that entails. We have been trying to remove sources of infection from him for months and just tonight I think we realized I might be a (the?) source. I finished a course of Cefadroxil in Nov then in Dec I tested positive. I just finished 10 days of Augmentim on Monday(11th) and now I have a strong positive. Can I get some suggestions on what to take to knock this out? I also think I may have had PANDAS as a kid based on my behavior and how ,my son is (oppositional/angry). He acts similar to how I was (and still am, just I have learned to live with my personalty problems). I have even been diagnosed with Schizoid Personality Disorder but maybe its something else? Anyway I need some antibiotic suggestions to ask the doctor about. Thank you!!
  21. Some of the things you listed at the bottom of the post could be considered OCD. For example, my daughter’s OCD is around clothes and how things “feel”.
  22. Hi, my DS10 was just diagnosed with MTHFR c677t. I know this can cause histamine issues and the need for B6, B12 and folate supplementation. Any recommendations on how to do this for a 10year old ? That is —- b vitamin ideas/brands as well as ideas for histamine reducers? Thanks!!
  23. Has anyone found this effective? Has it really helped with motor and vocal?
  24. For a new onset of symptoms (going on 5 weeks now), what is the consensus on the cunningham panel? Pediatrician is not opposed to ordering it- but as with anything is skeptical if it has any value this early on. Initial Strep ASO was only slightly eleveated, and response to Augmetin thus far (9days in) has had minimal effects. My thought is that we're only a few weeks in, and we have very little invested time/money/medications in treatment thus far- so if CP can confirm PANS/PANDAS, then we at least know which way to go with treatment. From what I've heard though- is the CP doesn't really confirm anything, because skeptical Drs are also skeptical about the CP.
  25. ashly

    Please help - India

    Please do help with your suggestions - especially the seasoned members of the group. Really looking for advice to find some direction in this tough journey. Thanks much!
  26. Yes. I almost lost my mind. (I'm talking abuot "Brain Lock", I haven't heard of one called "You Are Not Your Brain" before and I thought I'd heard of all the OCD books by now! If it's another one by Jeffrey Schwartz, though, I might give it a miss - no offence.) No offence, but why are you asking that in this thread? Shouldn't it have its own thread, really, let alone a thread about the duration of action of ibuprofen not being a very sensible place for it, just because that thread like almost every other thread on here mentions OCD?
  27. Has anybody ever tried the therapy outlined in the books "Brain Lock" or "You are not your Brain?" Supposed to have very good long term effects with OCD, anxiety and intrusive thought. Just wondering on feedback.
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