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Everything posted by Lacy

  1. 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
  2. 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
  3. 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
  4. 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.
  5. 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?
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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?
  12. 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.
  13. 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.
  14. 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!
  15. Update for everyone (I hated to open a new thread for this): Sabrina was on Spring Break all last week and was in her 3rd/4th week of antibiotics. She was with us so there wasn't any major drama. This week Sabrina has finished up week 4 of the pink stuff and will be starting her new bottle tomorrow for week 5. Now then, guess what? Every day this week she's had fantastic days at school! This hasn't happened since before November of last year - remember, she was on the long term antibiotics and then after 4 months of being off of them she went back to uncontrolled? I'm desperately
  16. Here's to hoping it helped... I just sent my note to your Oprah link. I tried getting my local NBC news interested and sent their sister station's story, but never heard back. ::Sigh::
  17. I almost didn't read it because I'm not sure I can take more negativity towards something that is very real for us all. I wish they'd stop forcing us in the direction of psychiatric assistance.
  18. I have yet to get anyone to sign their John Hancock next to the PANDAS diagnoses. For awhile they were suggesting the possibility but now I've run into a bunch of dead ends where doctors and specialist aren't subscribing to its very real existence. Definitely let us know what area you're from and hopefully someone can help recommend a doc or two.
  19. Usually DD gets behind in her work at school because she starts to meltdown. A lot of work has been scribbled on, torn up, crumbled up and attempted to be thrown away during her fits. However the teacher will send home her missed work and then I'm forced to sit down with her and make her work on it. Usually I don't have to fuss too much at her to do it, but I absolutely have to sit with her or stay very close by - i.e., she'll sit at the kitchen table while I'm cooking dinner and I wander back and forth to keep an eye that she's doing her work. We have a really tough time with her handw
  20. Hi all! So DD went to her dentist appointment and it turns out that it was nothing serious. They couldn't take xrays (it was 2 days too soon since the last one for insurance to cover them - argh), but after a good cleaning they polished up a bit. However, I thought they still looked discolored. The dentist said that baby teeth tend to be a brighter white than the adult teeth that come in behind them. She showed me the differences with DD's other adult teeth and she was right - they were darker than the baby teeth. Also, since we're on well water we're going to get that tested - a
  21. Hi Noelle! I'm loving your name - it's DD's middle name - spelled the same exact way. Yep, we live about 40 minutes West of Richmond (we live in the "sticks") but when we "go to town" and work, it's all in the Short Pump area. Colleen's NP office just received my paperwork (they need that before they can make an appointment) and called me today. They're SO pleasant to speak with and I can't say as much about the many doctor offices and staff we speak to on almost a weekly basis. I'm with you - this PANDAS stuff is completely over our Ped's expertise. In fact, I'm quickly learn
  22. Today is little girl's day of doctor appointments. She starts her morning off with a much needed visit to the dentist... which brings a quick question to mind... Between me and DH, we have fairly strong and healthy teeth. We've noticed DD's two front teeth are slightly discolored. I don't know if it's because we're on well water and/or a mix of the different medications she's been on. They're her adult teeth and I'm really interested to hear what the dentist has to say about it. I wondered if anyone else has noticed anything like this with their kids? And for the record, she's very
  23. DD has been diagnosed as OCD, but I don't think it's as bad as most with OCD. Her OCD issues are more along the lines of over obsessing with the weather (specifically tornadoes), and obsessing about death - and crying about people that died that she has little to no memory of. God forbid the sky look a little too dark, or for there to be even a little bit of wind to set her off panicking. To my knowledge she's lightened up a little bit with the scrubbing the counters in her class. The first two tornadoes & death are the most prominent. It's funny (not haha funny) how the grass is alwa
  24. [Colleen - If you don't mind, would you PM me the name of the practice and doctor/nurses you're dealing with? We have travelled up to Charlottesville on a couple of occassions - pediatric geneticist appt and developmental pediatrician - no luck on either visit. We're definitely interested in DD seeing a believer!] Wow, you all are great listeners - thank you so much for the kind words! It's a nice morale booster when you've got such a wonderful group of people to lean on. After talking to various people last night (non-believers and belivers alike), I had a huge question mark weig
  25. Edited (again) to let everyone know that I have an update posted on the 2nd page regarding our visit to the immunologist. It's anti-climatic to say the least. Bummer. Edited to say: Our family has never been as brave as Nicole and her family (NBC news story her and her family did was beautiful...and sad). However after contacting a couple doctors today and getting nowhere, I finally took a deep breath and contacted my one and only contact with a NBC12 news reporter here in Richmond. I sent her Nicole's link and explained that we too were desperate for help. I don't know that my conta
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