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mompaisley

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About mompaisley

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    Connecticut
  1. Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!
  2. Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!
  3. Yes, Dr. T says there is a connection between EDS, POTS and PANDAS. I have Hypermobile, my hubby and son have Classical. My daughter has PANS. Would love to see Dr. T figure this all out. What a mystery!!!
  4. Had a great phone consultation with Campbell's PANDAS doctor. I am the strep carrier, so I am starting on antibiotics immediately. Campbell may be the first documented case of PANDAS initiated by Coxsackie Virus B. She starts on Valtrex tomorrow. Otherwise, everyone else is good (we were all blood tested). Really grateful for Dr. Trifiletti.
  5. Wow! Really great article to show friends, family members and even doctors?! Clinical Psychologist describes how she came to believe in PANDAS.
  6. PANDAS affects the area of the brain that handles this. Often kids will feel a frequent need to "go" or no need at all. Or they will have bowel incontinence. This is a symptom of PANDAS which can come and go. My daughter is incontinent right now. In fact, that was the first symptom. I thought she had a UTI. She didn't.
  7. Thanks for your responses. I am still going to try it, if my friends will give us some. Otherwise, we will try the Camel's milk.
  8. I have been reading about Camel's milk, and how some people think it is the "poor man's IVIG", because it provides immunoglobulins, hopefully resetting the immune system, similar to IVIG treatment. That got me wondering if breastmilk would work in a similar way. I have read the thread about whether or not your PANDAS child was breast fed. But I am wondering if anyone has tried using breast milk to treat PANDAS? I have asked a couple of ladies I know who are currently nursing their babies whether I could get some of their breastmilk. Haven't heard back yet. I am thinking about making f
  9. MissMom, I am wondering how you treated for warts? Some of the pads might be salicylic acid, which is similar to aspirin. I am wondering if just enough gets into the system to less the brain inflammation, and get rid of the tics? Just guessing. No warts in my house, but a foster child I had for a while, whom I suspect of having PANDAS (he has been diagnosed with Tourette's) had warts when he lived with us for a while. Hmmmm. . . .
  10. Dawn, I wish I could advise you on the traffic - I don't live in that area - two hours away. But every time I have driven in New Jersey, the traffic has been awful. I hope someone local can give you better info.
  11. I had another thought. New Jersey traffic is notoriously bad. Just hope your husband and son are prepared for what could be a very long drive from the airport. Perhaps knowing this in advance will help them plan a bit better.
  12. Dr. T does not have a wait, and he can do phone consults.
  13. I made up a chart on Excel, comparing plans and guess-timating our doctors visits, procedures and meds. It's still a gamble, but you might get a better sense comparing the plans in an actual possible scenario.
  14. Give Dr. T a call. He would want to know if things are not getting better, and he may change things.
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