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libera last won the day on November 17 2017

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  1. A few years ago my daughter (now 16) was diagnosed with PANDAS. We've made tremendous strides since, and she is no longer taking medication other than a few supplements. Her last strep infection was in 2015. One "symptom" that remains though, is her constant need for social stimulation. I am not sure if this is really part of the PANDAS, or ADHD ( diagnosed before PANDAS) or possibly maybe even OCD. It is like she needs to be entertained 24/7. She has been like this for a long time, and maybe it is just her personality. She can't seem to be engaged in any sedentary/quiet activitie
  2. I'm also in the Chicago area . . . would be interested in meeting up.
  3. Trying to connect some dots . . . would greatly appreciate your response. 1. Does your PAN/PANDAS child have hazel eyes? 2. Are they vegetarian (not culturally)? 3. Was their mother vegetarian during their pregnancy?
  4. Thanks for your encouraging post!!! So great to hear that your daughter is doing so well! We are going to a new neurologist next month and would like to start fresh (last pediatric neurologist didn't believe in PANDAS). Any advice on how to approach him? To me it is obvious brain inflammation caused by an auto-immune response, but I don't even know how to get the conversation started . . . both kids did way better on abx but Dr, K only prescribes them for a limited time. Of course we have the usual "bucket list" of symptoms (ocd, anxiety, depression, "adhd", school refusal, et al)
  5. I totally agree with your assessment - it is most likely instance of labeling a set of behaviors without looking at the cause. Many diagnosed with PDA syndrome share similar characteristics of those diagnosed with PANDAS - high anxiety, school refusal, PDD-NOS. Is PDA syndrome really describing a manifestation of auto immune disorder? I would say very possibly. Truthfully, to me, the value is not in the label of PDA syndrome but rather in the strategies that have been identified to help those with the presentation similar to PANDAS - namely the high anxiety and school refusal. B
  6. Researching school refusal and came across PDA syndrome. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. Anyone else heard of this syndrome? It has more widespread acceptance in the UK. Just so much of it sounds like Pandas son . . . think there is definitely some overlap. Worth looking into . . .
  7. Our son is also experiencing extreme school anxiety and refusal. We put him in a partial hospitalization program but still ended up pulling him from his school because he just couldn't overcome the negative thoughts about it. I really do think it is based more in OCD than anxiety/performance issues. I want to have him tested for Lyme (and we lived in a high Lyme area for awhile) but getting out of the house proves to be very challenging at the moment. DASU, appreciated your rant . . . I could relate on so many levels. Yes, the ever elusive "normal" . . . I pretty much avoid Faceb
  8. The backstory: DD was diagnosed with PANDAS last summer, and I began to believe DS (age 12) also had it. He has been officially diagnosed with ADHD and dysgraphia. We began a 2 week Abx trial last October that went well - he showed significant improvement. Also during the time of the Abx trial, we started him on ADHD medication, because sixth grade was proving to be a disaster for him. He couldn't focus, or be organized, and it was contributing to his anxiety. Our daughter had done well on ADHD medication, and we were hopeful it would provide some benefit. His doctor recommended Str
  9. Just this week our PANDAS daughter came down with strep like symptoms while on abx. The strep test came back negative, even though my daughter was convinced she had it. She experienced the symptoms for about two days, then seemed to return to normal. Then the note came home from school that someone had strep. From what I have researched, It seems that some PANDAS kids just may react to strep even the infection is actually NOT in their bodies. I liken it to those peanut-allergy sufferers who have the allergic response even if they haven't eaten a peanut (airborne, etc.). A few months
  10. Thanks for your reply . . . is the oxyctocin prescribed?
  11. Hello, Newbie here . . . dd13 got PANDAS dx in August after years of trying to figure out what what was wrong (I am sure many of you have been there). One of the things we most struggle with is the social deficits . . . over the years, what I have heard is "Asperger-like" but not ASD. And that darn stare. What I really want to know if anyone saw a great improvement with the social deficts after IVIG. Part of me thinks that the deficits are really because her brain has been inflamed all this time, and she missed out on the social learning process. If that is the case, then IVIG won't ma
  12. Know your post is from a few weeks ago, but I did want to chime in that our Pandas doc told us absolutely no probiotics during antibiotic treatments.
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