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  1. Past hour
  2. Unfortunately the only one anywhere near me is Dr. Aureen Pinto-Wagner, and it seems she doesn't do anything with immunology or the other physiological aspects of PANS. I already have a psychologist and a psychiatrist in Durham, what I need is help with getting to the bottom of gut/food sensitivities. I will contact her anyway, in case she knows of any support groups for people with biomedical in addition to psychological issues, but I'm not too hopeful.
  3. Today
  4. What were the lab ranges for "normal"?
  5. 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. Help with food adversons

    As counterintuitive as it might seem, it is possible that the abx will help the food aversion. You can only try and see.
  7. Help with food adversons

    For DS the food aversion and difficulty swallowing is directly related to brain inflammation. Years ago, we found that if he took ibuprofen 3x a day for a few days, he had much less trouble. Now he takes turmeric capsules twice daily which seems to make things much easier on the food front. Once in a while, he still gets an occasional challenge with eating. When that happens he takes 5 mg prednisone for a few days along with daily antibiotics and gets things right back in line. He still self-restricts and has a limited diet, but is doing much better than before he added the turmeric.
  8. Help with food adversons

    Interestingly, for us removing the focus of "eating" was the best treatment. I think that as long as I wanted to make DD eat well and have her be healthy, she used food as a means of getting our utmost attention. My tactic of ignoring what she eats, just making sure that she has good food available and letting her pick her own choices worked best. By today, I don't even seriously serve her anything. She is old enough to buy and prepare her own foods, or serve herself of what I cooked for the rest of the family. Once the focus was removed I was stunned when she started liking foods she previously disliked, and eating lots of healthy good food. She is now a health food freak, and this is not coming from me. (Perhaps even to the point of obsession....but I will not focus on that either ) Your are not mentioning your child age. If he is young enough, this might not be relevant, but DD18 started this when she was about 4!
  9. Yesterday
  10. My DS was recently disgnosed with Pandas (took him to Dr Trifiletti). His main symptom is food adversion. Since September he has had a fear of choking and has only been eating soft foods. (Yogurt, Pudding, Soup, Pedisure). Within the last few weeks, he added scrambled eggs (which he ate non stop for 2 weeks then dropped it) and now he added pasta, which he has been having every night for dinner. I have a phone call scheduled with Dr T on the 18th to go over his bloodwork and see what treatment he suggests. All other symptoms (intense panic, seperation anxiety, mood swings) have all gotten much better but his food adversion (and fear of choking ) hasn't. For any of you that have gone through this. Will merely prescribing an abx, actually make it want to eat again and get rid of the fear? Or will I have to go with a low dose anti-depressant-therapy? He is seeing an eating therapist once a week. I will keep going to her because I feel like she can really help him long term (he's always been a picky eater) but just curious... what finally got your child to eat again and how long did it take? Thanks so much for any advice, this community has been so helpful and truly a life saver for me.
  11. Last week
  12. I've found 2 ways to reduce tics

    Hi enessimsek, Have you taken any supplement in this long 18 year journey. thanks for sharing the experience. Winson
  13. Cause of uptick in symptoms?

    Thank you so much for your response. I'm understanding more and more; but it's slow. It's just so much to take in. Another question- how do you figure out what more nuanced triggers there are- allergies, etc? Or, does time and calming the immune system alleviate these? Thanks again!
  14. Caught in a Loop

    Very helpful! Thank you very much for putting into words my exact thoughts. I was not able to articulate the issues at hand and you were! Appreciate your time and all you do to support parents on this board! I think ACT is a very important concept and I will talk to our psych soon about these issues.
  15. My 10 yr old son was diagnosed with PANS by an integrative medicine doctor by the name of Mae Kinaly in Irivine, CA. We live in Manhattan Beach in LA county. She did a ton of blood work, in depth history and immediately started him on azithromycin and supplements. She is a little kooky but I feel is a very in depth doctor with my son's best interests at heart. She does offer IVIG. We also went to Dr. Miroslav Kovacevic in Chiago for a second opinion and ultimately IVIG. Hope that helps.
  16. Caught in a Loop

    Wow, that's a tough one. That sort of "thought OCD" is really hard to address, particularly as our kids get older and better at concealing some of the stuff that goes on in their heads. Chances are, if you adopted a no-tolerance policy and "bumped" him out of that train of thought whenever you caught him doing it, he'd just find ways to conceal it better, leaving you thinking maybe he'd managed to shake it, but instead he's still indulging in it. If anyone else has ERP suggestions for this, I'd be interested in hearing them. I will tell you that we were never especially successful with ERP for this sort of pervasive thought OCD, given as the typical ERP tactic would be to somehow expose them to the fear itself. But how do you expose him to these symptoms that he's so dreading and desensitize him to them when 1) they can be very real, in fact, 2) in the long run, it's probably a good thing that he's sensitive to how he's feeling because it can help him take appropriate steps in the future, and 3) "giving" him, or asking that he pretend that he has, in fact, developed these full-blown symptoms that he fears, I'm not sure will desensitize him to them. I wonder if maybe some sort of PTSD treatment might not be more applicable here, since it seems that's really a good bit of what's going on? The perseverating over it is OCD, but the fear itself is very PTSD like, don't you think? As for him seeking reassurance, my experience with ERP would be that you would be encouraged to withhold that, rather than feeding that monster. Really tough to do. FWIW, when my son became a teenager and we felt we'd pretty much exhausted our ERP techniques and strategies, finding them lacking for, especially, pervasive thought OCD, we moved on to ACT, Acceptance and Commitment Therapy. It basically approaches these intelligent, analytical thinkers with a response that says, that's what you think, but that's just a thought and nothing more than a thought. And it has no more power than a thought such as "There's an apple on the table" unless you GIVE it more power. Accept that you have thoughts, both positive and negative, and commit yourself to prioritizing and acting upon those thoughts that are beneficial to the life you want, and accepting those thoughts you have that are generally less constructive, but giving them no additional power. More nuanced than that, of course, but that's more or less what I carry with me from our ACT experience. And, in the end, it did help my DS. Sorry not more help, but hope you find some relief soon!
  17. Plasmapheresis

    DCMOM -- I am sorry to hear your children are still suffering. I am a PNP and have worked with a lot of PANS/PANDAS patients. The Cunningham Panel tests for 4 anti-neural antibodies and the Cam Kinase II. If the Cam Kinase II is elevated it means the autoimmune encephalitis was triggered by infection and the infection is still active. I am looking to find where it says in the literature to treat with antibiotics before during and after PEX (having a little trouble finding the source). If there is a high Cam Kinas II indicating an active infection, It is my impression that Dr. Cunningham believes you still need to continue to treat the infection before during and after PEX to prevent a relapse. I am unclear if Dr. Swedo agrees with this, but if your children are having relapses it might be something to look into. Hope this helps!
  18. Hi All, I have a 16 year old who had done very well for over a year until October of this year. He had a major flare (despite prophylaxis). Came out after 2 weeks and after 1 week re -entered another flare. That lasted 2 more long weeks. He has again been out a week and we look to be headed back in soon. He's getting more and more nervous as he fears the flare. I should add the flare is awful. The weeks where he is "out of the flare" were still full of more mild anxiety - but he could function and he could think. Helooks sick physically and mentally. I need help with ERP suggestions because his primary OCD right now is scanning his body to "check" for a myriad of symptoms. He's so tuned in to how he feels before a flare that he's constantly checking and seeking reassurance. I think he might actually throw himself into these flares for lack of a better term,. He has enough physical symptoms (bloating, constipation, flushing, ear popping, joint popping, neck pain, fatigue, hair thinning...) and it all reminds him of the flare and boom - anxiety up-- which then equals another flare. He has a psych who has been doing some CBT. We have a functional medicine doctor looking into all his gut issues. We have a PANDAS specialist who is recommending IVIG. We will address this later this month. I just feel like we are in a loop and I don't know how to get out!
  19. Cause of uptick in symptoms?

    Unfortunately, I think that with our kids, particularly once the autoimmune reaction is set off to the extent that we discover PANDAS/PANs to begin with, any number of things can trigger an "uptick" or a flare: allergies, stresses, lack of sleep, viruses, bacterial infections, etc. From our experience and reading through some of the research, my understanding (and theory) goes something like this: autoimmune response is, at least in part, inflammation. Inflammation, particularly of the blood brain barrier (BBB), can give birth to all sorts of physical and mental responses as an inflamed BBB does not function as it is intended; an inflamed BBB becomes more porous, letting antibodies and other materials in that belong out, and possibly allowing some substances (neurotransmitters like serotonin) out when they should stay in. In our experience, it can take a while to get off that merry-go-round -- to calm things down sufficiently to the extent that the BBB returns to full health and proper function, and the brain is once again insulated against continued antibody onslaught and/or loss of helpful neurotransmitters, etc. So, all that's to say that I would do whatever I could to calm that inflammatory response: ibuprofen, curcumin, Omega's, exercise, regular and proper-length sleep, etc. Between that, the abx and good old-fashioned time, hopefully, things will settle out and get less volatile. Best to you and yours!
  20. My DS (7) has been on antibiotics (Zithromax & Malarone) since the end of August for Lyme, Bartonella, Babesia and PANS. Symptoms began in January of 2014. Though he wasn't in a flare when we began treatment, he had never entirely recovered from the last one (January-May of 2017). He has flared each January since 2014. The changes I saw from the antibiotics were almost immediate. He was focused, could remember words, began sleeping through some nights, was happy again for the first time in about a year. However, lately he has had an uptick in symptoms: anxiety, lack of focus, nightmares, nightwaking, ADHD symptoms, forgetfulness, etc. it isn't a full flare, but definitely an uptick. I'm sharing in the hope that someone with more experience might see something (or know something) that I might be missing. There is a lot of stuff going around at school, including strep, though I haven't been able to connect his flares to Strep in the past- though it's possible. This is very reminiscent of a similar uptick I saw last year before his worst flare last January and I'm terrified that we are on the same path- antibiotics or not. Please let me know if you have any suggestions for things I might be missing, things we should check for, etc. Thank you. So grateful for the wealth of knowledge here, and the support.
  21. Thank you Bob!!! Much appreciated!
  22. Shake and vac

    Hi Ronnie and welcome to the forum. Organic is always the best choice for anyone and especially for children! Also non-GMO I am only aware of corn products being potential tic triggers for those who have sensitivity/intolerance/allergy to corn?
  23. Shake and vac

    Hi -- you are making some very positive changes.Good for you. So glad you are reading labels now. It could be that an air purifier in the bedroom with a HEPA filter would make a difference, if you can afford that. It is important that the bedroom be allergy free. Can you steam clean his carpet or whatever the powder was put on? Do you have a doctor/naturopath who could check to see if he has an intestinal candida yeast infection and needs an anticandida medication--and could determine if he has a nutritional imbalance? Hoping you see real improvement with your efforts!
  24. I am only familiar with the Anti Strepptolysin number (sometimes called ASO). It is not sky high, only a little high - indicating recent strep infection. You won't know whether the infection is ramping up, or cooling down unless you do another test (not too far apart from this one). Dr. T. will certainly know what to do (if anything) about the others.
  25. We went to the hospital today re my boys tics the appointment came through after 5 weeks request from doctor. We had our first appointment in 2016 at the time my son was only grunting and sniffing although I was so upset for him as it was annoying everyone him being in close proximity. 1 year later and the tics have progressed to lots of neck shoulder and leg lifting whilst seated . I've got to say some days horrific where I could sob watching his little body throwing itself about. The consultant was very patient at Samuel Johnstone and I felt we were very important not just rushed in and out. He clicked with Lou and I was so relieved he was careful he didn't terrify him with diagnosis . My heart broke when Lou asked him to fix him and his face was devastated when he saiD it wasn't quite so simple to do that. The neurologist was anti medication and felt it wasn't the way for such a small child to go , he suggested pain relief as and when to help with the neck pain especaillly in the evening and always after food. I usually grade the pain with my 9 year old and ask him if he needs it on bad days. However we have been referred to CAMBS and I've looked at web site and can't see how this links into Tics or Tourette's as he called it. Has anyone been referred and what are the benefits .? Thank you for reading my post and I hope anyone else there with a child like mine is also holding it together .xx
  26. Shake and vac

    Thank you for taking the time to reply to my post regarding the shake and vac . ive put it in the bin ! I used it to freshen my boys room and felt it was a trigger in the evening so wondered if anyone else hadn't put 2 and 2 together . My son has had some really bad days where his neck is rotating and his leg is lifting at the same time especially whilst sitting down . It's been really emotional for him and his neck has ached lots some days . We went to cinema on Sunday and pleased to say it was really much better. This week we had 2 days of rapid blinking and throats clearing but these haven't replaced the neck tic. We seem to be adding tics on the way rather than replacing them . Grimacing has stopped and so has tremors which I'm so pleased about for him. ive implemented lots of little changes with diet and fresh air no strong cleaning chemical either . No bubble bath just Epsom salts , regularly bed time and meditation at bedtime . Im hoping to see some more improvement but really not sure what else to try . im reading everythIng on the packaging now and horrified about how much chemical additives are in our food. thank you once again for your reply x
  27. Just got my sons blood work results that Dr T ordered. These were the results that were abnormal but I don't know what it means. Vitamin B 12 - 1370 IGG Subclass 2 - 407 IGG Subclass 3 - 106 Anti Streptolysin - 273 Absolute CD3 Cell - 2665 %CD 4 - 26 (low) Absolute CD 8 Cells - 1175 % CD 16 +CD 56 - 26 Absolute CD 16 +CD 56 1147
  28. Shake and vac

    Hi, I am new on this forum. I have heard about consumption of pop-corn may cause or aggravate tics. Will organic pop-corn make any difference.
  29. Earlier
  30. My son has PANS he has strep and chronic sinusitis . Both cause cause PANS. They are both genetic reversible conditions.
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