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awilliams74

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    awilliams74 reacted to qannie47 in Co-Morbid Discoveries with Pandas DS   
    Looking good folks...looking good! No anger. No opposition. Calm. Emotionally Regulated. Happy...the child is happy.
    It feels right too...if that makes any sense.?
  2. Like
    awilliams74 got a reaction from emst in Anti Inflammatories   
    Neuroprotek (mast cell stabilizer/anti inflammatory) - would love to know if anyone found a cheaper comparable alternative?
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    awilliams74 got a reaction from BeeRae22 in Tired of Therapy   
    We are currently in a therapy break. My understanding with CBT is there should be a start and stop schedule from the beginning with extra sessions if needed (?). When DS was 9 yo PANDAS/OCD hit. We started therapy about 6 months later - he was healing but not completely healed. We had previously purchased the book "What to do when your brain gets stuck" and he had been working with that prior to starting therapy. We went weekly for approximately 5 sessions when she referred us to someone that was a great fit for him. The new therapist was a good 40 min. away and didn't accept insurance. He did specialize more in CBT and I believe was more effective for our DS. We had a set 10 sessions with predetermined goals set in the beginning. We did deviate slightly based on progress and needs. The first few weeks we met weekly, then biweekly, the last few session being 3 weeks apart. We did have a flare in the middle of therapy and there was no amount of therapy that could have changed that - but the therapist was able to reassure him that this would happen, use his strategies as best as possible and wait for it to pass (it was reassuring and comforting to DS that if it was uncontrollable it was ok, just know it would pass as a medical illness was the cause). His OCD and PANDAS symptoms remain mild but present. We will follow up with the therapist as needed from here out. The therapist was helpful to DS and our entire family, but not sure I believe unending therapy weekly would have been helpful though.
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    awilliams74 got a reaction from MaryAW in Update on PANS daughter, 11   
    This was a great post to read, thank you so much. My DS is 10 yo and we have battling this horrible disease for a little over a year. He had a very classic/overnight OCD onset with multiple correlating difficulties (eating, sleeping, OCD being the absolute worst and crippling, etc.). We are currently 3 months without a big flare, just had a mild blip after a Halloween party and sleep over where a couple of the kids ended up being sick a day or two later. In hindsight, he had many signs for several years (rigid thinking, diagnosed ADHD inattention, etc.) along with many infections so I'm thinking the episode that "tipped it" was just a major flare - took several months for diagnosis and treatment. I would put him at 85-90% of his baseline for the past 3 months on antibiotics, probiotics, vitamins with supplements (omega 3s, vit D and B12), and zyrtec and singulair for allergies. I always question ourselves if we should not be pushing more for full recovery (at the expense of more poking and prodding and interruption to his daily routine). Our pediatrician who first realized what this was is trying to manage his care, we have a local MD who initially diagnosed, and our DS is one session away from completing CBT with pretty good results. Most of the providers/specialists I am finding are "out of network" and cash only. We are hesitant to try any ADHD meds for fear we will be just covering up symptoms but considering low dose abilify to see if it helps DS - can do the work just can't focus (failed adderal so stimulants are out/kicked up OCD, intuniv not effective enough to justify the side effects). Your post gives me encouragement that maybe full recovery might come with puberty as it seems no one is able to predict if permanent damage/difficulties will remain. I keep hearing we should be thrilled with 90% and trust me we are - we would have given anything to be at this point a year ago. He is currently in school and just rejoined a sports activity for the first time since this onset. This recent "blip" also reminds me how fragile he can be.
    Again, thanks so much, this is the kind of story I was searching for today.
  5. Like
    awilliams74 got a reaction from vpsan in Acidopholous/Sac B. Question?   
    I am sorry if this is a redundant question, but I've read so much it's all starting to blur. DS 10 has been on antibiotics for almost a full year since initial PANDAS diagnosis. We're in a fairly good place although not completely healed (80%?). He takes prophylactic Keflex twice daily, omega 3s and an over the counter probiotic, along with CBT biweekly. I'm trying to figure out which probiotic would be best for him (current one is almost gone). It appears ProGut and Florastor pop up quite a bit in the PANDAS blogs, literature, etc. Does anyone have an opinion? Should they both be taken together or only one? I feel a little lost and feel this is a very important piece of his healing. Any help would be appreciated. Thanks!
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