KAS Posted January 20, 2010 Report Share Posted January 20, 2010 Hello all! I have five minutes to kick this post out, so here goes. We moved back to Denver from Nebraska this past month and our daughter who has finally recently been diagnosed with PANDAS has now all sorts of appointments scheduled with specialists. If anyone has any thoughts on the specialties (necessary, unnecessary) and/or specific docs, please let me know! Our immunologist in Omaha, Dr Kobayashi, has referred us to National Jewish here in Denver, to see Dr Gelfand. After a phone call for her history, etc, he has "accepted" our daughter. However, his scheduler says he also wants her to be seen concurrently by a rheumatologist (Dr Dragone?) and a psychiatrist (Dr Kelsay). He will also be doing skin allergy testing at her appointment. Two days before we are scheduled to see the new immunologist (Gelfand) and rheumatologist (Dragone), we are scheduled to see a pediatric neurologist, which Dr Kobayashi had said we should set up. She is set to see Tim Bernard (pediatric neurologist) who I found on one of hte PANDAS sites I believe. Thoughts? Suggestions? I hate to run her through any unnecessary tests and appointments if it doesn't need to be. Sorry, I have a visitor now and cannot think straight! Antibiotics are working for her, but Kobayashi has her alternating between two (each for 3 weeks) and it takes her about a week and a half for her body to adjust and her tics and hyperactivity/etc to level out after we switch each time, so basically, half the time she is doing well, half the time not. Okay I will write more soon. It's been crazy with the move and all that goes along with that. Hope you are all well. Elizabeth, I so need to call you up soon!!! Doug, thanks for your call. Sam...hope you are doing well!! Talk soon!!! Sara Link to comment Share on other sites More sharing options...
dcmom Posted January 20, 2010 Report Share Posted January 20, 2010 Sara- It does sound like lots of appts, which I know is hard on the kiddos. Do you know that all of the doctors are believers in pandas? I would think you want to get immediately to the pandas specialist (is that the immunologist?), who will actually offer you treatment (antibiotics, steroids and ivig- if needed). Then I would think you could take time to do the rest of the appts- if it would be better for your dd. It sounds like you will have all of your bases covered. I am interested if your Dr talked to about why you are switching between 2 antibiotics? Which are they? Does your dd take daily? Interesting, Thanks. Link to comment Share on other sites More sharing options...
momto2pandas Posted January 20, 2010 Report Share Posted January 20, 2010 Wow, a move and a whole new set of doctors - a lot to go through! It seems to be that Dr. Gelfand is on the right track, though it probably depends a lot on your daughter's history. The danger of having so many specialists could be that they might conflict in what they want to do or see different pieces of the picture as "someone else's job". Does he just want evaluations from all of these, or does he actually want her to see them in an ongoing way? The latter sounds like it could be complicated, unless one of them is clearly driving the bus. When I had a drug-induced lupus episode way back when, I was seeing all of these specialists (same set, in addition to my GP) and it was very time-consuming and a challenge to keep everyone on the same page. But then again, it was reassuring to have so many experts on the case. For example, with all of the crazy symptoms I had it was reassuring to have the psychiatrist say that he felt that the physical symptoms had an organic basis and were not "somatization" (in my head) - and that he did not feel that I was a hypochondriac. It was reassuring to get the opinion/evidence that I didn't have anything permanent going on with my nervous system (tumors, degeneration, etc.) And the team did eventually figure it out and get it resolved. I have thought about getting evaluations from some of these recently but haven't gotten motivated enough to set it all up given that the vast majority of the time, none of us are symptomatic. Still, I have wondered if a pediatric neurologist might have some ideas for ds6's tactile hypersensitivity (always there at some level), and if a rheumatologist might have some ideas for my joint pains that come and go. (The immunologist is a no-brainer for us.) Haven't given thought to seeing a psychiatrist since so far, psych sx always resolve within a few days with antibiotic or steroid tx. If they didn't, I would probably bring one on. However, I have wondered if, as the kids get older (if it gets worse rather than better), they might benefit from some counseling in dealing with this stuff. Just some thoughts. Hello all! I have five minutes to kick this post out, so here goes. We moved back to Denver from Nebraska this past month and our daughter who has finally recently been diagnosed with PANDAS has now all sorts of appointments scheduled with specialists. If anyone has any thoughts on the specialties (necessary, unnecessary) and/or specific docs, please let me know! Our immunologist in Omaha, Dr Kobayashi, has referred us to National Jewish here in Denver, to see Dr Gelfand. After a phone call for her history, etc, he has "accepted" our daughter. However, his scheduler says he also wants her to be seen concurrently by a rheumatologist (Dr Dragone?) and a psychiatrist (Dr Kelsay). He will also be doing skin allergy testing at her appointment. Two days before we are scheduled to see the new immunologist (Gelfand) and rheumatologist (Dragone), we are scheduled to see a pediatric neurologist, which Dr Kobayashi had said we should set up. She is set to see Tim Bernard (pediatric neurologist) who I found on one of hte PANDAS sites I believe. Thoughts? Suggestions? I hate to run her through any unnecessary tests and appointments if it doesn't need to be. Sorry, I have a visitor now and cannot think straight! Antibiotics are working for her, but Kobayashi has her alternating between two (each for 3 weeks) and it takes her about a week and a half for her body to adjust and her tics and hyperactivity/etc to level out after we switch each time, so basically, half the time she is doing well, half the time not. Okay I will write more soon. It's been crazy with the move and all that goes along with that. Hope you are all well. Elizabeth, I so need to call you up soon!!! Doug, thanks for your call. Sam...hope you are doing well!! Talk soon!!! Sara Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted January 21, 2010 Report Share Posted January 21, 2010 Hello: The only doctor that I know on the list is Dr. Kelsey. Their office told me that she treats PANDAS and when I asked if they ever treated with IVIG, they responded back that I would not be "a good fit for their office." Let me know what you discover because we do need some good PANDAS doctors in Denver!!! Elizabeth Link to comment Share on other sites More sharing options...
familyof4 Posted January 21, 2010 Report Share Posted January 21, 2010 National Jewish is great but it will be expensive as they typically bill as a hospital - we have been to them for many other issues - not PANDAS though. My son already is seeing a phsychiatrist that we like (in Thornton). My only question that I think you need to ask National Jewish is if they treat PANDAS with any other protocol other than neuropsychiatric drugs. I do know that they are at least familiar with PANDAS. If Dr. Bernard is the Children's Hospital Neurologist who is listed on the saving Sammy facebook page then I would proceed with caution. I called and asked his nurse if he was familiar with PANDAS and was he taking new patients. The nurse called back later in the day to let me know that the doctor had no interest in treating PANDAS so we did not go see him. I am at the point I am tired of throwing money away on doctors who either don't believe in PANDAS or are not educated on how to treat it. Heather Link to comment Share on other sites More sharing options...
KAS Posted January 27, 2010 Author Report Share Posted January 27, 2010 I have come up for air! Thank you for your replies. In response: dcmom: I am having a hard time finding out exactly what each doc thinks in terms of PANDAS and their treatments. Their nurses are pretty vague for the most part, saying "the doctor would be happy to discuss those options" with you or whatever. I wish there was more of an ability with a specialist to do a quick q/a session prior to deciding if it is worth your time going to them. I know...dream on! The immuno in Omaha has our daughter (60 pounds, 7 y.o.) alternating every three weeks between 250 mg erythromycin and 500 mg amoxicillin. I think they are both proving themselves effective, but again...it takes her a good 1.5 weeks to build up an effective dose in her system, so she is symptomatic about half the time. I asked the immunologist if there was a name for this alternating antibiotic protocol, and he referred to it as "the UCLA protocol." Thanks for your insight on the docs and their treatment choices...stay tuned!! momto2pandas: Thank you so much for pointing out the "who's driving the bus" question. I will keep that in mind and point-blank ask the immunologist (if it sounds like his treatments are what we are hoping for) if he is willing to take us on in this manner. I have decided to put the pediatric neuro appt off until after the immunologist appointment since they are not in cahoots (ped neuro and immuno) and I am not getting much from his staff in terms of what he does with PANDAS patients, and after reading familyof4's comment on her experiences with his office. I agree that the psych symptoms resolve with proper PHYSIOLOGICAL treatment, not PSYCHO-PHARMACEUTICAL treatment, and heck, if our daughter ever needs some counseling, a plain old psychologist trained in this area should suffice, so I am going to give the immunologist (Gelfand) a chance to justify why we need the psychiatrist appt, and if it doesn't sound logical to me, I will be canceling this appointment. It's crazy how I'm having to strategize these specialist appointments. Thanks for your comments!! Elizabeth: Dr Kelsey's office told you it wouldn't be a good fit...wow! The likelihood that we'll be going to that appointment is lessening even more. Thanks for your input on this. And yes, we need some good PANDAS docs in town for sure!! familyof4: How discouraging, that a doc listed on the Saving Sammy facebook page is not interested in seeing PANDAS patients! I didn't get this message from Dr Bernard's staff, but they wouldn't throw me a bone at all when I prodded about what treatments he considers. Ugh. I called to postpone this appt and they said to call back in a couple of weeks to see if the new schedule is out. I really just want to get in to this immunologist, Gelfand, and see what his ideas are, and go from there. Heather, please private message me if you ever want to get in touch by phone or meet up sometime. We should start a Denver support group (or rather, share-your-resources-and-experiences group)...who's in??? So based on the feedback, looks like two of the four docs I mentioned have some pretty fundamental strikes against them based on others' experiences with their staff. I'm going with the immunologist/rheumatologist double-punch appointment day for now. I also will be taking our daughter to the pediatrician tomorrow b/c of three days of a fever. Her teacher said strep is running around the school. SWEET! Hopefully the new pediatrician will woman-up and join our cause; she said she has another patient with PANDAS and is interested and willing to learn more about it, so hopefully that is truly the case. Because of this forum, the snippets of info I have been learning through the years, and the confidence I am gaining in asking questions of medical professionals...I have hope that our daughter and your kiddos will lead as healthy and "normal" a life as possible. Stay tuned! And thanks for your support! Sara Link to comment Share on other sites More sharing options...
Gibster Posted January 27, 2010 Report Share Posted January 27, 2010 Hi. We are in Denver also. We moved here 2 years ago from DC where Dr. Latimer successfully diagnosed and treated our son for PANDAS. For us the beginning was so easy! Then we moved to Denver........ I have yet to find a doctor willing to acknowledge PANDAs out here. It has been frustrating. We lucked into a family practice physician who was willing to do blood work and basically give me any medication I thought my son needed. Then my son had a massive flareup and we were on the hunt for something more than our family physician could provide, including answers. Totally struck out. Met with various neurologists at Children's and even 1 at the Children's outpost in Parker. We first went to Children's last January (of 2009) and I could tell just by how the doctor entered the office she didn't "believe" in PANDAs. They had just had a symposium with the neurologists and infection disease experts about various issues, including PANDAs, and concluded there isn't a scientific basis for PANDAS. Totally whatever. That said, the doctors were very nice, could see that my son was in trouble and were happy to work with us on doing something for him quickly. After years of antibiotic therapy and removal of his tonsils and being poked and prodded we decided to try clonidine. My son's PANDA is mostly tic/anxiety rather than OCD. For him the clonidine works. In the end my questions about his strep issues were never answered. We did check his heart valves to make sure the strep wasn't affecting those but other than that we have been focused on treating the symptoms rather than the cause -- I think that is the best we can do here in Denver. Link to comment Share on other sites More sharing options...
Eloine Posted October 22, 2016 Report Share Posted October 22, 2016 Hello! I know this is an old thread, but I am wondering if anyone has since had any good experience with Denver practitioners who have experience with Lyme/coinfections... I am asking for a freind of a freind who is desparate for her newly diagnosed daughter. Thanks in advance for any suggestions/help! Link to comment Share on other sites More sharing options...
boysrlove24 Posted October 22, 2016 Report Share Posted October 22, 2016 I read a fantastic article on PANDAS by a doctor in Fort Collins - his name is Dr. Steven Rondeau. She should research him and the drive to Fort Collins from Denver is easy. Link to comment Share on other sites More sharing options...
jan251 Posted October 22, 2016 Report Share Posted October 22, 2016 I read a fantastic article on PANDAS by a doctor in Fort Collins Unfortunately, he does not have experience treating lyme. Link to comment Share on other sites More sharing options...
boysrlove24 Posted October 22, 2016 Report Share Posted October 22, 2016 Maybe he can give a recommendation or referral???? Link to comment Share on other sites More sharing options...
jan251 Posted October 22, 2016 Report Share Posted October 22, 2016 Maybe he can give a recommendation or referral???? He could . I sent a private message to the poster with the same referral. Link to comment Share on other sites More sharing options...
boysrlove24 Posted October 22, 2016 Report Share Posted October 22, 2016 I think I saw the article he wrote from a post you put up awhile back :-) Link to comment Share on other sites More sharing options...
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