Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

  1. Hi Lacy. My name is Paige. We live in Richmond also. Seven year old son Owen diagnosed in Sept. How did your visit go? Do you recommend those docs? We go to Dr. Mary Megson. How has your treatment gone so far? I would love to discuss everything we are doing. So far he is better, but still has motor tics and still moody. We are doing gfcf diet and that is his biggest complaint.


  2. A brief update for all - sorry it's been forever! Our daughter has been seeing Dr. Fortner now ever since I made my original post. She knows PANDAS on a personal level and has been an amazing source of help and sympathy. Our DD has been on long-term antibiotics for over a year now. We started off on the full dose and then we backed off to half as a maintanance dose. When DD starts exhibiting symptoms we up it to the full amount for two weeks or until the symptons wane. I would absolutely recommend her to anyone in the Virginia area looking for help with their PANDAS child. Incid
  3. Richmond, Virginia Area (And these ones take insurance!!) Pediatrician, Dr. Julie Fortner http://www.richmondpediatriccenter.com/def...t=1&Child=1 [i may be a little premature at recommending Dr. Fortner, but read on:] We have an appointment with Dr. Fortner next week and I couldn't be more thrilled - I think we finally hit the jackpot on someone who will LISTEN! So far her staff (receptionist and nurse) have been extremely sympathetic, warm and friendly. And while it's not my business to give details, I think it's safe to tell you all that Dr. Fortner (from what her nurse was
  4. When DD was on 250 x2 a day, she was on it for 9 months straight. She was so wonderfully happy - back to her old self. After we took her off the antibiotics (it was the end of May 2008), she remained "normal" until late September, early October 2008. She reverted back quickly and it just so happened that there was a flu bug and strep running amuck through school. She never seemed to catch them, but that's when she 'tanked'. When we tried to reintroduce the antibiotics, it didn't work after 3 or 4 weeks and we gave up because her moods were becoming more severe. Being desperate, we swi
  5. Our DD's handwriting seems to follow the same trend... good days and on antibiotics, handwriting is great (for her age)... bad days or not on antibiotics - terrible sloppy handwriting. DD is very artistic (takes after Daddy - I don't have a creative bone in my body), and you can even see the same results in her pictures - the quality seems to vary depending on whether she's in the "waxing or waning" mode of her symptoms.
  6. After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that. What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS?
  7. You guys are the best support system!! Since that visit on Tuesday, DH and I have been kidding with one another by making fun of the doctor (between ourselves of course)... for instance, one remark the doctor made to us on Tuesday: Normal people always feel happy. I'm not sure happy is the word I would have used (maybe content or indifferent) because unless I'm living in La La land or am on drugs... hmmm WAIT A SECOND! She puts kids on drugs for a living! No wonder everyone around her is so happy! Sorry, sorry... bad me. I'm literally afraid to tease much more than this on
  8. What a day yesterday was! A brief detail... Our DD's pediatrician kept pushing a particular psychiatrist on us and finally when we came to yet another deadend we scheduled an appointment to see her. We first saw her back in May and I broke down in tears of relief because she said she would help us, and that she wasn't ruling out PANDAS even though she felt it wasn't a clear cut case of PANDAS. She even told me that she'd call Susan Swedo to get her take on things. But for now, so that we could approach this in a scientific method (because that's what really speaks - proven results), sh
  9. When DD was seen by an Infectious Disease Specialist he specifically told us that he was going to diagnose DD as a "strep carrier" because he wasn't sure if the insur. company would pay for anything if he diagnosed her as PANDAS. After her T&A in 2007 her strep tests were coming back negative and I don't recall her having a positive ever since - which makes it more difficult to get doctors to listen. PANDAS or not, our new doc (Pediatric Psychiatrist) said that it's pretty undeniable that the antibiotics are effective to quieting the behavioral symptoms that DD presents. I still beli
  10. I sure hope someone can help recommend someone to you. As of yesterday we were on new doctor #15 ... hmm.. or maybe it was #16. At any rate I think we may have found a sympathetic ear. She plans on calling Dr. Swedo to talk to her more about DD and see if they can't come up with a good solution. Ultimately this new doc (a pediatric psychiatrist - go figure) has told me to prepare to start from the beginning so we can scientifically approach this and make sure we have everything covered. She sounds like she'll be thorough, but I'm not getting my hopes up - they've been dashed away so many
  11. I completely echo everyone's sentiments and offer a lot of sympathy for what you're having to go through. ::hugs:: We got extremely lucky with our DD's school - especially because it's way out in the country and they don't always get the cream of the crop with staff. The school psychologist just happened to have worked 1 other PANDAS related case in the county so she was on board with us from the beginning. Luckily she was also the first one to do DD's child studies testing so we could qualify for the IEP. Out of curiosity what is an OHI? In my heart I know that it would've been a
  12. Not sure that this helps, but our DD has been placed on Lamictal by her psychiatrist which is supposed to be for seizures but also helps bi-polar patients. Personally I don't believe our DD needed to be on it as it only seems to vaguely mask her symptoms and I don't believe she's bi-polar. We think the antibiotics are working much better and plan to ask about weaning her off the Lamictal. Isn't it funny (not ha ha) what some treating specialists can convince us to try?
  13. I'm not certain this fits with what you're seeing, but anytime our DD goes into a fit of rage her eyes do some strange things... of course the blank "nobody is home" wild stare, but we notice that one of her eyes will go sort of "lazy" and drift a little. When I see that in her eyes it absolutely upsets me to no end.
  14. Last week was her first official fantastic week at school since going downhill this past November. Unfortunately today I've already gotten my first call from school saying she was having a rough morning. Her retort to the assistant principal was to say that her medicine wasn't working and that's why she was being bad. Hmm.. I'm thinking we talk too much in front of her sometimes. I don't want her to use that as an unecessary crutch. Anyways, I'm trying not to get too down yet. I'll continue to give updates.
  15. Beautifully written! I couldn't help but smile when I saw you ran into the same problem I did - the 2000 character limitation!! If anyone gets a response, let everyone know right away! Anyone else getting to this thread late - please consider writing too! You can't ignore the squeaky wheel!
  • Create New...