FallingApart Posted October 9, 2009 Report Share Posted October 9, 2009 Hi there, I think that I may have inadvertently found a good thing. Perhaps it is a good thing because the doctor was PANDAS friendly. But the immuno doc that we are going to go see in Nov recommended that we see a neuropsych in order to get dd tested. The immuno doc said that a neuropsych does tests that are standardized and are recognized within the industry. We took this to mean that whether your child has PANDAS or not, these tests could be useful to you. OUr whole family went to meet with the neuropsych yesterday and it was a very positive experience. I do think a large part of it was likely due to her being PANDAS friendly. Last week's meeting with the child neuro was a total nightmare and he does not believe in PANDAS. I'm wondering if anyone else has done this route, what you think of it and if we should discuss it. If you have never heard of it (which I hadn't before 10 days ago) I wrote a blog post about our experience and you are welcome to read it here, http://pandasmom.wordpress.com/2009/10/09/...-pandas-friend/ Link to comment Share on other sites More sharing options...
ShannonOtown Posted October 9, 2009 Report Share Posted October 9, 2009 My son is seeing a Neuropsych in St. Pete, FL. He went through different physical test verses written question/test. She also is referring him to an immunologist that works in her center. My son has an appt on the 22nd and I can't wait to see what's next. It's nice to work with a Pandas specialist that has collegues/specialist in the same medical center so they can colaberate together on the result. You will see in the link, the center specializes in PANDAS. http://www.allkids.org/body.cfm?id=885&fr=true# Link to comment Share on other sites More sharing options...
pixiesmommy Posted October 9, 2009 Report Share Posted October 9, 2009 We did this a year ago (before we had heard of PANDAS) to see if she was on the Autism spectrum, etc. Our results were that she was extremely gifted and could possibly have ADD. Also told a great deal about how she learned (auditory vs. visual, etc) Link to comment Share on other sites More sharing options...
michele Posted October 9, 2009 Report Share Posted October 9, 2009 Boy are you lucky to live there. Dr. Murphy is the one who initially saw and confirmed the PANDAS for my son three years ago. She got us on the right path. But we are in OH so she couldn't treat him over state lines with meds. She is great and has been on many PANDAS and Tourettes studies. She is very informative and will share with you her beliefs. What current treatments have you done? Please share here what you find as you go through this process. It is good to know where to find her. She responds well to emails too. Michele My son is seeing a Neuropsych in St. Pete, FL. He went through different physical test verses written question/test. She also is referring him to an immunologist that works in her center. My son has an appt on the 22nd and I can't wait to see what's next. It's nice to work with a Pandas specialist that has collegues/specialist in the same medical center so they can colaberate together on the result. You will see in the link, the center specializes in PANDAS. http://www.allkids.org/body.cfm?id=885&fr=true# Link to comment Share on other sites More sharing options...
ShannonOtown Posted October 9, 2009 Report Share Posted October 9, 2009 Michele, I thank the angels everyday I found her! I sent her an email with my sons timeline and symptoms and her dept called the next day and invited us on her Cefdinir Study (of course after she dx him). We are completing the study in the next 2 weeks. Because it's a study, we're not sure if we were actually on the antibiotic or placebo. My son's mood changed and hand washing improved, but the ticcing, night anxiety and frequent urination remained the same (up and down). He's 11.5 years old, so I think just him knowing what was going own and being able to understand his symptoms really helped his mood improve. (And mine). Dr. Murphy is on to the next option, which might be Augmentin. We're going to the immunologist on the 22nd, so she might be waiting for those results before making a decision. I eager to get started... Link to comment Share on other sites More sharing options...
LNN Posted October 9, 2009 Report Share Posted October 9, 2009 We had a neuropsych evaluation scheduled for my son because of his learning struggles. But when we met with Dr Latimer, she told us not to have him tested while he was ill. That the results we got wouldn't necessarily be "true" in the respect that many if not all of his problems could be caused by Pandas and not an underlying "permanent" issue. She had nothing against testing. But felt we'd be steered down the wrong path if he were tested while sick from Pandas. Her advice was to get him better first and then see what, if any, issues remained. Then we'd know whether testing was still needed. Since the testing was a going to be between $2K-$4k, it seemed like good advice. We are 2 months post-pex and see some problems resolving. We saw a similar response to prednisone. So I strongly believe it's the Pandas and not a second issue. It's just going to take time for all of it to shake out. In the meantime, my son gets reading help at school and his teacher cuts him slack when she can. But we have no plans to do any testing - at least not unless he's still struggling a year from now. Link to comment Share on other sites More sharing options...
FallingApart Posted October 9, 2009 Author Report Share Posted October 9, 2009 Has anyone been able to use their findings to present to the insurance company? I am pretty positive that my daughter is relapsing again right this minute. Ugh!!! Today is day 33 and last month it was day 33 as well and we did the treatment on day 34. Link to comment Share on other sites More sharing options...
michele Posted October 9, 2009 Report Share Posted October 9, 2009 I have to tell you we did the cefdinir antibioic for years and it did take away his urination frequency and some of his compulsions. We just recently stopped it because of some bowel issues such as encopresis. I wonder if they have seen this before with cefdinir? Sounds like you are in good hands. I wonder if your son has been getting the placebo? Best of luck. Keep me posted. Michele,I thank the angels everyday I found her! I sent her an email with my sons timeline and symptoms and her dept called the next day and invited us on her Cefdinir Study (of course after she dx him). We are completing the study in the next 2 weeks. Because it's a study, we're not sure if we were actually on the antibiotic or placebo. My son's mood changed and hand washing improved, but the ticcing, night anxiety and frequent urination remained the same (up and down). He's 11.5 years old, so I think just him knowing what was going own and being able to understand his symptoms really helped his mood improve. (And mine). Dr. Murphy is on to the next option, which might be Augmentin. We're going to the immunologist on the 22nd, so she might be waiting for those results before making a decision. I eager to get started... Link to comment Share on other sites More sharing options...
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