Lacy

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. Incidentally, Dr. Fortner's office and nurse/assistant all are amazing. To this day it shocks me at how polite everyone is, and willing to help - and we're not talking a small office! They have multiple locations around the area, AND if you need a titers test done (which Dr. Fortner doesn't mind ordering), you don't have to go to the local LabCorp for the draw. Her own office does the blood draw and "Mo" is especially great with DD when it's time for that. I just can't say enough good things - we're just truly happy with Dr. Fortner and are glad to finally have a medical doctor advocate on our side! If anyone has any questions, please don't hesitate to e-mail me! lacyhatton@aim.com Lacy P.S. We never did go back to Dr. Koch. He is a very nice man, but was very open that he didn't know much about PANDAS and we got the impression that he didn't like keeping DD on the long term antibiotics.

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 telling me) has first hand experience with dealing with PANDAS children. I am absolutely looking forward to next week! Pediatric Infectious Disease Specialist, Dr. William C. Koch http://www.vcuchildrens.org/?id=716&sid=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 switched strategies and finally got talked into putting DD on an SSRI (mood stabilizer). It never worked. We decided to give the antibiotics another shot and it wasn't until week 4.5 or 5 that we saw her turn around. During the end of this past May we tried taking her off everything on a doctor's request and that was a big nightmare (I put it out in the forum somewhere), but a long story short, we've got DD off everything and when her moods are back to severe (which usually happens in school - which starts up again 8/10), we plan to send Dr. Cunningham a blood sample to see if she has any luck finding something. Hugs to you and good luck!!

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.

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? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

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 online because I'm convinced she'll blacklist us in the medical community somehow. She's fairly high profile (medical director, and, and, and), so in the grand scheme of things, she's probably over busy and not doing her patients any justice by trying to burn the candle at more than two ends. OH! DH told me I forgot to tell everyone the even more unprofessional part - perhaps even worse than telling me how unimpressed she was with my tears! During our appointment her phone kept going off - vibrating and beeping. She'd look down at it and hit a couple buttons and then look back at us. What should have been the final straw was when her phone rang during our session and without missing a beat (while I'm in mid-sentence), she took the call!! Instead of apologizing to US, she actually apologized to the caller and said she was in session and could she call back when she was through? I was completely flabbergasted when she ended the friendly call and looked at us as if we had been interupting something - kind of a look like, so yeah, you were saying.... but no sorry, not a word! I just sort of regrouped and tried again. Unbelievable! LOL they can't even make this stuff up in movies! We're thinking about contacting Colleen's docs again and trying to set up an appointment (thank you again Colleen for the info!), but we've also contacted another Immunologist - but this one believes in PANDAS. We're hoping she'll be able to order a couple tests to be ran, and then I'm going to look into this Dr. Latimer. What can everyone tell me about Dr. Latimer? By the way, thanks again all!

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), she wanted DD off all medications and to start over. Since taking her off the antibiotics (and the Lamictal which wasn't helping at all), DD's behaviors have been in a downward spiral. Luckily she's on her summer break, so where it usually manifests itself the most - at school in the form of complete meltdowns, we've been able to deal with it at home and luckily the sitter's. Fast forward to yesterday... I was extremely relieved that DH could attend this appointment with us, and so he could meet this doctor who was "willing to help us". I'm so grateful he did come because I was completely unprepared for what would transpire during our visit. The doctor wanted to know how things were going, and I gave her a high level, but "to the point" journal that I had been keeping since our last appointment. This journal was very high level and in large font (doctors I've found don't have time to read through pages and pages of documents - although I think that's a poor excuse). So I was a little taken aback when she looked at it as if it were a foreign object and then absently laid it ontop of some misc. files. At this point, I'm still thinking we're on track, and that she might read it later. The doctor started the onslaught of questions to DD (who is not quite 8 yet - soon) with her cronies (as DH later called them) stared on. I think the cronies were students. She barely introduced them to us. DD was too shy and put on the spot to answer any question with genuine thought. She just agreed or said I don't know to all questions and meekly looked at the cronies across from her. At some point I became frustrated with the lack of "kid gloves" the doctor was using during her q&a session so I started asking the same questions only a little more kid-friendly. I tried to get DD to tell me the answer, but the doctor got bored of that or must have thought I wasn't qualified enough to repeat the questions because she moved the subject along. I tried to explain to the doctor that since taking DD off antibiotics (and that stupid good-for-nothing Lamictal that I still don't believe helped), that DD had been experiencing OCD thoughts again, and that she had becoming uncharacteristically clingy towards us. I'm not sure if there was a language barrier, or if I wasn't being clear because I found that the majority of the appointment I was being talked over - not allowed to answer questions accurately - oh this part is good... She specifically asked us to rate DD's OCD behavior on a scale of 1-10. Sure! Only problem was that her scale criteria didn't accurately describe DD's OCD behaviors correctly. 1 was no OCD, and 10 was that DD was so OCD she wouldn't leave the house. I tried to explain that wasn't how her OCD was manifesting itself, but she absolutely refused to hear me out. Throughout the appointment she would continue to cut me off and talk over me. She was so disrespectful. I thought doctors are supposed to listen?? At some point she said that she did her "due dilligence" and that nowhere in the information that I had provided her did it reflect any symptoms of PANDAS - and she kept reminding us that she knew what PANDAS was because by darn she's had patients with it that she treats. Uh huh. She said that typical PANDAS patients had elevated titers levels and DH stopped her on the spot and said, well then your due dilligence would have shown you that DD's titers levels were completely off the charts and only come down (still not into 'normal' levels, but it comes down) with the introduction of antibiotics. She didn't seem to remember those results and I completely forgot to ask her whether or not she even received the enormous mailed packet of DD's medical information and tests I mailed to her - doesn't matter. This doctor said that ethically she could not, and (she said this:) to be clear WOULD NOT prescibe DD antibiotics when she didn't believe this was PANDAS. That is was obvious (by this time I'm in quiet tears and must look pretty PO'ed, because she look at me and said this) that DD's issues were clearly anxiety and there was family history of mental issues... and somewhere in this she said (I didn't hear this) to me - I'm not impressed with your tears. DH heard this and told her that the tears she was seeing from me were tears of frustration with the way our appoointment was moving forward. Ultimately the doctor said that we needed to find a medical professional that we trust who will help us. I almost laughed outloud when she said this, but managed to keep it together enough to spit out - what did she think we were doing?? And have been doing?? We've been seeing various medical professionals since DD was four years old - trying to find someone who was willing to help us and credible, and not a hack. I think at that point she thought I was calling her a hack because she stopped me short and informed me that she didn't even have to respond to that because she knew she absolutely was not a hack and started laughing(!!) at me and looking at her cronies who joined in. I think by this point we knew we were officially in the Twilight Zone. We must've looked pretty funny - me especially with my tear stained face (red nose and eyes), and I'm sure I must've stared at her like she had lost her mind because she ended the conversation with telling us it would not be necessary to schedule another appointment with her. I'm leaving out a lot of details but we pretty much spent the session going round and round in circles. I couldn't get her to explain to me why she wanted to use psychiatric medications when quite clearly antibiotics were working. She just wouldn't respond - she'd start talking about something else and seemed satisfied that she was answering my question. Sorry for rambling on. If you all are like me, you're probably wanting to know this doctor's name. Message me if you're interested - she practices here in Richmond, VA at the Virginia Treatment Center for Children (aka: VTCC), I would be happy to relay the info. Thanks for lending an ear! I'm going to go start back at square one now.

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 believe in my heart of hearts that this is PANDAS but majority of DD's docs/specialists sure are dead set against that option - denying PANDAS's very existence. So frustrating sometimes. Our fingers will stay tightly crossed that this Ped. Psychiatrist won't give up on us. She told us she would be contacting Dr. Swedo for guidance. I sure hope she gets in touch with her before our next appt. June 23rd.

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 times before. Hugs to you and your son!

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 much more difficult (if not completely impossible) task to get everyone to "buy into that PANDAS thing" if it had not of been for that school psychologist. Unfortunately she's no longer at DD's school, but is still in the district. The new school psychologist that did DD's 2nd child studies testing definitely tried steering everyone towards behavioral and emotional issues, but luckily nobody really bought into it since they've seen DD at what should be her norm (when we did her long term antibiotics during 1st grade) - she's very sweet, caring and playful. Not so much shy, but a "normal" child her age. So it's around this time of year that I still get nervous about DD moving forward to a new teacher. School in these parts wraps up the Friday before Memorial Day, and starts up again mid-August. These past two years (1st & 2nd grade) we got extremely lucky with her teachers - they are identicle twin sisters who are very close and have very similiar teaching methods. It was like getting the same teacher twice - and they both obviously care deeply for DD despite her meltdown moments - they know it's not normal for her. They also have been extremely tolerant enduring my countless e-mails and notes to check how DD is doing on almost a daily basis. Sorry if I started rambling... time to hit send.

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?

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.

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.

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!