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prestopony

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  1. I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitamin C for constipation (as needed, which used to be all the time at the beginning of treatment!) - I can't stress enough the brain/gut connection to think about during treatment. She takes Thera-lac probiotic too And Super Lysine Plus for immunity support. To balance out the stress of so many years of anxiety and poor sleep we use Cortisol Manger, and Seriphos - I think these are at the bottom of the list of what I think has really been helpful though And, she is on the low-FODMAP diet Upon initial diagnoses, her PANS doc put her on Augmentin which was amazing. Came off of it, flared, tried Zithromicin, didn't work, went back on another month of Augementin, came off of it, and stayed well. During flares, unless her bloodwork shows something, we use a month of Naproxen (regular over-the-counter Aleve) - and it works beautifully. So, treating the inflammation seems to be key during flares. I would think also that a too-short supply of antibiotics is not going to help. Now, my son, who does not have PANS that I know of, but is suddenly dealing with extreme intrusive thoughts and OCD (my daughter's was just EXTREME separation anxiety and EXTREME generalized anxiety) I'm taking what I know about inflammation and scouring this board for help - and trying some things with him: NAC - an amino acid that has had some documented success helping OCD in larger doses L-Theanine - another amino acid that promotes relaxation and calms the brain and elevates GABA and serotonin I just started him on Enhansa last week. Reason being we just found out that he's allergic to EVERYTHING - grass, trees, weeds, mold, dust, cats, chickens (we have eight), dogs (we have three) guinea pigs (we have two). So he has started allergy shots, but in the meantime I can only think that there is inflammation in him from all of these undetected allergies. His probiotic is called Mood-Super strains - with strains that are geared specifically towards anxiety and depression I just learned about this product yesterday from my sister-in-law. My son's cousin, who has OCD, takes 5-htp (another amino acid) and he says it helps a great deal. She uses the Natrol brand. He does not take any pharma for his OCD/anxiety, and said when he stopped taking the 5-htp he noticed he felt a lot worse, so he now takes it again. As far as pharma for my daughter for her anxiety, we held out as long as we could, but she became unsafe and jumped out of a moving car. So we eventually we put her on an SSRI - it worked a bit, but never really well, so we switched to another, it also worked a bit but never really well, so we added in another, which, as expected, worked a bit, but never really well. Fast forward to a year after PANS diagnoses, and this truckload of supplement she takes!, she is off of all pharma, she took a class at the local high-school (and I didn't have to sit in the class with her, lol!), she now sleeps over at friends houses, and is enrolled in the Community College for the fall. So while the psych meds helped a bit, they were not the final answer for us. Sending you good thoughts for your daughter - and lots of good thoughts for you too! Hang in there mom!
  2. I can't speak to obtaining Augmentin without an Rx, but I thought I'd share something else that worked for us. My daughter went through two rounds of Augmentin with amazing results. When she started to flare a while after the antibiotics treatment ended, her PANS doc was hesitant to go right to Augmentin as my daughter's bloodwork was still ok. She suggested we first try Naproxen (brand-name: Aleve) anti-inflammatory for 30 days and see if that helped. It was amazing. Now that is our first line of defense when there are illnesses going around and my daughter starts to flare. I know not everyone responds the same way, but just thought I'd pass along how much Naproxen has helped us in place of antibiotics.
  3. My daughter takes Enhansa (a curcumin-based supplement) daily, and during a flare takes Naproxen along with it. Her PANS doc recommended this and does not have any concerns about taking them together. My daughter responded beautifully to the Naproxen and it is now our go-to during a flare.
  4. Hi, I can't speak to IVIG as we didn't go that route, but I'm in MA too, in the western part of the state. My daughter's primary PANS doc is in NY, but her allergist/immunologist is located in Northampton, MA, and has said that he is one of two doctors who does IVIG (I'm not sure if he meant the area or the state?). We have consulted with him throughout her PANS treatment and he does have some experience with PANS/PANDAS kids. While he will say he is not an expert treating PANS/PANDAS, he is extremely smart and one of those doctors who likes to figure things out. Her allergist's name is Dr. Bayuk, and he is located in Northampton, MA. Best of luck and sending you good thoughts on your journey to helping your son.
  5. I'm not sure I'll be much help here either - I wonder the same things you do. My 14 year old daugther is a PANS case - never had strep, but believe allergies/chronic sinusitis to be the culprit. Just diagnosed in March of this year, though suffering since she was a toddler - had excellent success with Augmentin, much less so with Zithro. Did 30 days of the Augmentin - we did see a minor regress when she came off the Augmentin that I don't think we were able to really regain, UNTIL - - - she had a flare about 6 weeks ago, I think due to a cold - no infection in bloodwork, so we opted for 30 days of Naproxen (Aleve) instead. She responded extremely well, dare I say back to Augmentin-like improvement. She is now off the Naproxen and seeming to maintain, but it's only been a week. So in total, I'd say she recovered from her first flare, and I'd credit the Naproxen. Her doctor's plan B - should she not have responded to the Naproxen - was going to be prednisone, just as an fyi. So I wonder what will happen with the next flare, or I wonder if she will just gradually diminish over time. She stays on her supplements all the time - in fact, I made the mistake of switching up her probiotic - and wouldn't you know - she definitely regressed. We went back to the old probiotic, and all is well again. She has about 10 supplements that she takes daily - everything from addressing inflammation to methylation to Vit D, Quercetin, and more. I'm also throwing a bunch of neuromotor stuff at her - the MELT method and MNRI exercises, to try to get her sympathetic nervous system to chill out. Her body has been in the fight or flight phase for 10 years or so, I just figure that can't be healthy. Since we've started these exercises I swear she's continuing to improve, so whatever the reason we'll take it! Good luck on your journey, maybe others will chime in!
  6. When I asked my DD (14) PANS doc about yeast – she feels there isn’t really a great test for yeast and gave her two days of Diflucan, figuring that it wasn’t a bad idea since my DD had finished a couple rounds of Augmentin recently. My daughter just finished her two days of Diflucan – and since then she has been energetic, happy, talkative, less tired, laughing with her brother, less anxious. Her therapist was wondering what had changed since last week. Coincidence, or Diflucan? Have others had a different experience testing for yeast? What other ways are there to treat for yeast that may be helpful? She is currently on a multitude of supplements, including curcumin (Enhansa) and a probiotic – which I think would be the two most beneficial to control yeast out of the ones she is taking, but is there more we could be doing – the change has been just amazing, I’d love to keep it going Any thoughts would be greatly appreciated!
  7. Maryangela - can you say more about a decline coinciding with dental cleaning? I was wondering what was up with my daughter this week, and she just had a cleaning on Monday. I never would have thought of that until you mentioned it.
  8. Thank you so much for posting this. We've struggled with anxiety forever, and while we have made some progress with therapy/CBT/anxiety meds, EMDR, etc., something about this just feels right. We have an appointment in early Aug. with a practitioner near us. Thank you again, and I'm so happy you saw positive results for your daughter.
  9. I thought I'd share a bit of our journey in case any little bit of it helps - our DD 14 (newly diagnosed PANS) still has extreme separation anxiety. She is doing fairly well now - except for the extreme separation anxiety. The difference for us is that she never could handle school – she was a preschool dropout - which looking back, knowing what I know now, I'm pretty sure she's had PANS since she was very young, but it's taken us this long and countless doctors to figure it out. Her PANS was at it worst when she was around 10 - before we knew it was PANS though - she was hurting herself, jumped out of a moving car convinced she was going to get carsick (which she never has to this day), fits of rage if her Dad and I were to leave the house together, OCD showering, emitiophobia, bedwetting, talk of suicide, suddenly couldn't be left alone at gymnastics, etc. When she was at her worst we got her started with a psychiatrist and a therapist. Her psych put her on Celexa. It helped some - we kept upping the dosage hoping it could do more, but it had it limits with her. Her psych eventually added in Busparone - the addition helped a little, but still not much overall. We then switched to Sertraline (and continued the low dose of Buspar) which we saw the most results from. The Sertraline seemed to take enough of the edge off the anxiety to allow her to access some of her calming down tools that she was working on in therapy. The next step for us would have been to try anti-psychotics, but we weren’t comfortable going that route, because we were functioning ‘enough’. Now, that all being said, the reason we finally ended up with a PANS diagnosis is because her therapist suggested we do a psych eval because she was not progressing through the separation anxiety / CBT like the therapist anticipated, and she wondered if there was something else going on. The psych eval led us to a new pyschiatrist who was familiar with PANS, and we started treatment. But, for that part of our journey I will say the Sertraline was the most helpful. She is still on it currently, 100 mg. Since being diagnosed with PANS - she is on many supplements now - in a nutshell: some to address her gut issues, some to address inflammation, some to address immunity support, and some to address anxiety. The specifics for the anxiety stuff she is on Lithium Oratate (Pure Encapsulations) and CBD oil (CV Sciences, 15 mg soft gel – squeezed into yogurt since she doesn’t swallow pills). I actually think all the stuff she is on has helped her anxiety – the whole gut/brain connection, inflammation, etc – I can give you a list of everything if you’d like. She has come off the Busparaone, her Exlax, Miralax and enema treatments, and her prescription acid reflux meds. Her OCD behaviors - while they were pretty mild before - are mostly gone. Her food restrictions have improved dramatically, she has actually gained weight and is finally 'on the chart' as they say. She is still on Sertraline for anxiety. We continue to work with her therapist on CBT and exposure therapy for separation. She continues to be homeschooled. She said she wants to take a class at the high school this fall - but after meeting the principal last week she fell apart (at home) and said she doesn't think she can do it, so we'll see. The therapy around separation anxiety - is for us anyways – very, very slow progress. We stared at 10 minutes away from her while she is at home with grandma. We are up to 1 hour and 30 minutes – and it’s been over a year for the progress. For us, therapy - and the psych meds - has been an integral part of her treatment. We actually saw the most improvement around her separation anxiety when she was on Augementin for recent sinusitis. It was like a switch had been flipped for 14 days. When she came off of it her old behaviors came back. We are now trying 30 days of Azithro - but it is not having nearly the same effect as Augmentin – in fact I'm not sure if I see much difference at all. I read some of your other posts – and I see that you mention sensory issues. My daughter struggled with extreme sensory issues when she was younger – she did OT which was helpful – but the most effective thing was the Wilbarger Brushing Protocol with joint compressions – it REALLY helped her. You can google it and there are some youtube videos. We did it every 90 minutes during her waking hours for 2 years. Now we just do it once at night, probably just for our own peace of mind. 😊 I was curious - what antibiotics did you use that seemed to be helpful for your son? Sending good thoughts for you and your son's journey.
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