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prestopony

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prestopony last won the day on July 6 2019

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  1. Sorry for the late reply! My daughter will get an occasional headache, but nothing that I would call a pattern with the stomach aches.( I however get terrible headaches that I can trace to things likes MSG and chocolate, just to mention it.) We did allergy testing through her allergist - it was the skin testing - and we've also done the food sensitivity test through a naturopath, though we didn't learn much from that test. We know she has the gene for celiac - but we've never done the official celiac test - she feels better when she doesn't eat gluten, and in order to do the official test she'
  2. Hi there, Ahhh, it sounds so familiar, like a trip down memory lane. :) My daughter, now 16, had stomach aches and constipation her entire life. She had seen numerous GI docs, nutritionists, etc, to try and treat it to no avail. We found the combination of Magnesium Citrate and buffered vitamin C to be the most effective for the constipation; we played around with the amount to get it so it worked, but not too well. Her PANS doc expressed that the buffered C really needs to go with the Magnesium Citrate to be most effective- and she was also particular that we get the Citrate form of Magn
  3. My daughter had a very sudden onset of emetiphobia, I think she was about 11 at the time. She was already an extremely anxious child, though not about throwing up. She had actually never vomited in her life, and one day she jumped out of a moving car convinced she was going to get car sick, which of course she never did, and still hasn't to this day. Her anxiety about vomiting then consumed her, she wouldn't get in a car, thought everything was going to make her get sick, she restricted her eating, didn't want to be around kids in case they had a stomach bug, etc. She had to wear those "Sea-ba
  4. 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 Vitam
  5. 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 everyon
  6. 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.
  7. 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
  8. 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 day
  9. 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
  10. 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.
  11. 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.
  12. 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
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