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momma2sethandjiji

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  1. Thanks for your reply. Regarding your experience in/around Nashville, do you have any experience with Dr. Daniel Kalb in Cool Springs? If so, what is your opinion. At Vandy, I never even used the term PANS/PANDAS or mentioned my having the consult with Dr. K, as at that point the locals were leaning toward Wilson's and honestly I was still ignorant on the whole disorder myself. Once he ruled Wilson's out (in about five seconds), he was very quick to say there is a new "buzz" about a disorder called PANDAS. He informed me that if I had read about it, to file it away -- that his speciality
  2. Me again From personal experience, could people please advise me of what they think each well known doctor is best at. For instance, like so and so is known best for ruling out this and so and so is known best for investigating any and all triggers, which doctor will fax orders from afar after you have personally seen them, which doctor seems to be most up to date on treatments, who is hard to get into, etc. At this point, I am not interested in treating PANDAS so to speak but interested in being convinced if it IS IN FACT PANDAS and/or ruling out anything else. I would like an explana
  3. Thanks for all responses. No we have not tested for anything other than the usual things Dr. K orders in the beginning. Don't quote me, but I believe a anti-strep titer, streptozyme, Anti DNAse. Then, the regular pedi did a CMP with a c-reactive protein that he said would identify inflammation. We also have never been tested or treated for parasites.
  4. I have posted twice before. My son was clinically dx'ed with PANDAS by Dr. K. following his steroid burst/antibiotic trial even though his symptoms worsened with each of the meds. His primary symptoms following mystery illness were hoarding trash, muscle pains, headaches, palilia (repeat whispering tic) and lethargy. All disappeared completely eventually but the repeat whispering tic which continues frequently to this day. Now, with a slightly runny nose and improvements in diet (for entire family, nothing to do with any symptoms), he has started in with a grunting tic. It has, of course,
  5. The test ordered was mycoplasma AB. Didn't see the AB part before. Results negative. I am assuming AB is antibodies. There is no numerical value. Thanks!
  6. Hi, After doing some research based on responses to my previous posts, I carried my son in to a new doctor and mentioned the mycoplasma issue. He has been infected with "pneumonia" on several occasions since about 3 years old. I do remember hearing the word mycoplasma several times. Anyways, I do feel this doctor listened. I feel very blessed. She admitted she was clueless about PANS/PANDAS, but did read my NIMH literature and has no problem doing whatever Dr. K and/or any specialist suggests. She ran a mycoplasma lab. It was simply ordered "mycoplasma" and came back as negative. T
  7. I am new to this diagnosis myself. My son was clinically diagnosed PANDAS by Dr. K in Chicago via the phone consult. Our problem started back in January following a viral illness that "turned into" mycoplasma. Once getting over those two illnesses, he basically became pale, lethargic, dark under the eyes and just not himself. This all started about two weeks following the end of antibiotics for the mycoplasma. During that window, he seemed fine. Following the onset of those symptoms, he had an episode where he woke up in severe leg pain. His was more behind his knee. He could not even
  8. Well, here I am again. I am glad I journal all of this, or I would confuse myself. A review - 7 yo ds, Seth, was diagnosed by Dr. K with PANDAS about a month ago. He recommended 14 days of Aug and a 5 day steroid burst starting the 8th day. I had posted about Seth having an exacerbation on the second day of Augmentin. He seemed to improve some from that about the sixth day in. Then, we started the burst, and again he got worse again with only repeat whispering. We saw zero signs of improvement following steroids. He basically remained "baseline" worse throughout the course of the meds.
  9. Gosh. I guess I will need to get it checked. Thankfully, we have an infectious disease specialist nearby.
  10. Sorry to be a board hog. I am trying so hard to get a grasp on this, so I can be armored for our next local doctor appointment. I have been thinking back. My son's first episode followed pneumonia. This was a bacterial pneumonia, and his symptoms following that were more physical. However, he was diagnosed with a virus shortly before the pneumonia which they thought induced the pneumonia. That leaves me asking that perhaps the preceding virus induced the leg pain, lethargic like symptoms versus the pneumonia. I say that because he had two episodes of confirmed strep following that over t
  11. I have noticed that exciting situations make my son wilder and his symptoms flare or I feel that way. Once was a fall carnival and today a birthday party. Is this common? We are in the two week observation following meds which made him worse in general, but some of the exacerbation were before meds. Thanks
  12. No, we have never pursued Lymes, as he has never had a tick bite or any other suspicious insect bite besides a very few mosquito bites. His episodes have actually both followed illness. His first episode followed mycoplasma. That was the one with the more physical symptoms. This followed a "mystery" virus. This onset as OCD and eye flinching tics. I realize there is the possibility he could've had a tick bite that went unnoticed, but do you think that that would cause these symptoms to follow two different sicknesses that were eight months apart? His first onset was this January when I
  13. Hello, My son is now on the first day of his two week observation period following 14 days of Augmentin and a five day steroid burst. Throughout the actual course of meds, he only got worse which some of you mentioned herxing in my last post. It makes complete sense, but would he still be herxing. I ask because on day one of observation, there is no improvement thus far, well actually worse. Is it the norm to see improvement if this is PANDAS since we are in the observation as ordered by Dr. K? I was thinking that was the purpose to further conclude PANDAS. He was repeat whispering m
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