Tattoomom Posted December 20, 2009 Report Share Posted December 20, 2009 I asked the Pediatrician last week if they'd be willing to do a trial run on antibiotics to see if it would help ds's tics,anxiety,ocd, etc... and the Ped. said she did not feel comfortable "Going into this blindly" to quote her. She's convinced it's not PANDAS because back in 2007 when this started, his ASO and DNASE-B were negative, as well as throat cultures. These tests were done 3 months after symptoms started. He also tested negative on rapid strep test last week, during a sore throat episode so she said he doesn't meet diagnostic criteria! What can I do? We really cannot afford to travel for help. We're in Jacksonville, Fl and the only DAN doctor here has a 1+ year long wait and doesn't accept insurance If I ordered the CAM kinase test, how will that help me? Are we qualified to be in the study since his tests were negative for strep? Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 20, 2009 Report Share Posted December 20, 2009 I asked the Pediatrician last week if they'd be willing to do a trial run on antibiotics to see if it would help ds's tics,anxiety,ocd, etc... and the Ped. said she did not feel comfortable "Going into this blindly" to quote her. She's convinced it's not PANDAS because back in 2007 when this started, his ASO and DNASE-B were negative, as well as throat cultures. These tests were done 3 months after symptoms started. He also tested negative on rapid strep test last week, during a sore throat episode so she said he doesn't meet diagnostic criteria! What can I do? We really cannot afford to travel for help. We're in Jacksonville, Fl and the only DAN doctor here has a 1+ year long wait and doesn't accept insurance If I ordered the CAM kinase test, how will that help me? Are we qualified to be in the study since his tests were negative for strep? If you cannot travel and I think it will be at least another 3 weeks before Cunningham begins CAM testing again, how about trying another pediatrician in your area? We've found a very wide range of responses where we live in terms of openness to PANDAS, and where your current pediatrician refuses, you might find another that is willing to prescribe abx, at least for a short term, during which time you can either find a longer-term solution, get the Cunningham testing, or both. Our pediatrician, too, is a "skeptic," but she agreed to prescribe abx under the "do no harm" phrase of her oath. Link to comment Share on other sites More sharing options...
Tattoomom Posted December 20, 2009 Author Report Share Posted December 20, 2009 If you cannot travel and I think it will be at least another 3 weeks before Cunningham begins CAM testing again, how about trying another pediatrician in your area? We've found a very wide range of responses where we live in terms of openness to PANDAS, and where your current pediatrician refuses, you might find another that is willing to prescribe abx, at least for a short term, during which time you can either find a longer-term solution, get the Cunningham testing, or both. Our pediatrician, too, is a "skeptic," but she agreed to prescribe abx under the "do no harm" phrase of her oath. Well, that's not really an option... I LURVE our Pediatrician, she's an MD but Holistic Physician also, which is why I'm surprised she's being so hesitant to try the abx. On top of not wanting another Ped. if we left the one we have, we'd never get back in, as they are no longer accepting new patients. I think I'm going to just have to BEG her to try the abx because you're right, what harm could it do?! Link to comment Share on other sites More sharing options...
PANDAS mom in Nebraska Posted December 20, 2009 Report Share Posted December 20, 2009 My pediatrician believed it was PANDAS, but was still hesitant to treat when her labs and throat cultures were negative a bit later after the initial diagnosis. I just this week contacted Dr. K in Chicago (per suggestions from other PANDAS parents on here) to set up a phone consult. I also gave my pediatrician a list of 4 doctors and all of their contacts so she could call someone for more advice for a treatment plan. She ended up contacting Dr. K and finally started my daughter on a month long full strength Augmentin dose. I am still going to do the phone consult with him as I've heard he will confirm the diagnosis if needed, and type up some guidlines for your pediatrician. This is what my pediatrician needed. She is willing to do it, but did not want to go in blindly. Its worth a try! Dr. K is on webpediatrics.com Link to comment Share on other sites More sharing options...
EAMom Posted December 20, 2009 Report Share Posted December 20, 2009 Here is a good florida DAN. Stephanie2 was able to get in to see them quickly. Not sure about insurance. http://www.latitudes.org/forums/index.php?...art=#entry43208 It'd be a bit of a drive...but many travel much farther for treatment! Link to comment Share on other sites More sharing options...
ajcire Posted December 20, 2009 Report Share Posted December 20, 2009 I don't know about your insurance but I kept my regular ped but still went to a different one who was familiar with pandas. The one I went to was a holistic pediatrician and he treated with antibiotics.. said that he was not an antibiotic pusher but in the case of pandas it really was necessary.. I had to leave him when he stopped taking insurance though.. I only saw him regarding pandas. I continued with my regular ped for all other medical stuff. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 20, 2009 Report Share Posted December 20, 2009 Well, that's not really an option... I LURVE our Pediatrician, she's an MD but Holistic Physician also, which is why I'm surprised she's being so hesitant to try the abx. On top of not wanting another Ped. if we left the one we have, we'd never get back in, as they are no longer accepting new patients. I think I'm going to just have to BEG her to try the abx because you're right, what harm could it do?! Well, if you have a long, good relationship with this pediatrician, then, frankly, begging might be just the thing. It worked for me! We'd been with ours for nearly 10 years, so I didn't want to change, either. So I took her a copy of "Saving Sammy," inscribed on the opening page with a plea for her to be open-minded and help us, and I'd written up what I jokingly call "The Maloney Medication Matrix" from the book (and a few points of clarification from Beth Maloney via email) so she would feel she had some place to start in terms of protocol. I also included the names, addresses and phone numbers of Sammy's doctors (Dan Gehler and Dr. Nicolaides) so that she could reach out for other professional consult if she wanted to. Link to comment Share on other sites More sharing options...
Chemar Posted December 21, 2009 Report Share Posted December 21, 2009 Tatoomom Dr Tanya Murphy is in Tampa Florida, so a day trip from you. She was one of the first doctors to begin recognizing and researching PANDAS. I honestly dont know what her protocol for treatment is at present, but did see she was listed in that NIMH PANDAS research info that Buster posted. She is now at Univ Florida Tampa and does see patients tho I dont know if she is accepting new patients at present perhaps your pediatrician may know of her (she used to be at Shands Clinic, Pediatric NeuroPsychiatry in Gainsville Univ Florida) and at least be willing to contact her? or as others have suggested, to contact other doctors at the forefront of PANDAS research and treatment to discuss the trial abx protocol with them on your behalf Link to comment Share on other sites More sharing options...
thereishope Posted December 21, 2009 Report Share Posted December 21, 2009 What is your ped saying is the diagnosis then? Does your child's symptoms improve at all with Ibuprofen(advil. motrin)? If they do, ask her the explanation for that. Link to comment Share on other sites More sharing options...
mama2alex Posted December 21, 2009 Report Share Posted December 21, 2009 If you have a good relationship with her, maybe you could compile as much evidence as you can as well as other supporting info for her to read, and give it all to her in a packet. Show her that you have done your research and know what you are talking about. Give her a list of your child's symptoms that are consistent with PANDAS, give her research studies, give her a bulleted timeline showing the progression of your daughter's illness. Has you daughter had any immunology testing? Was anything off? Give her the Saving Sammy book. If she has email, send her the links to Beth Maloney's interview and the Fox News segment. Give her the article (I've seen it on this forum, maybe someone else can share it) that tells why the antibody titers don't diagnose PANDAS. Give her Buster's Q&A. Maybe then she won't feel "blind." I asked the Pediatrician last week if they'd be willing to do a trial run on antibiotics to see if it would help ds's tics,anxiety,ocd, etc... and the Ped. said she did not feel comfortable "Going into this blindly" to quote her. She's convinced it's not PANDAS because back in 2007 when this started, his ASO and DNASE-B were negative, as well as throat cultures. These tests were done 3 months after symptoms started. He also tested negative on rapid strep test last week, during a sore throat episode so she said he doesn't meet diagnostic criteria! What can I do? We really cannot afford to travel for help. We're in Jacksonville, Fl and the only DAN doctor here has a 1+ year long wait and doesn't accept insurance If I ordered the CAM kinase test, how will that help me? Are we qualified to be in the study since his tests were negative for strep? Link to comment Share on other sites More sharing options...
Tattoomom Posted December 21, 2009 Author Report Share Posted December 21, 2009 What is your ped saying is the diagnosis then? Does your child's symptoms improve at all with Ibuprofen(advil. motrin)? If they do, ask her the explanation for that. She doesn't really offer a "diagnosis," I suppose she just thinks he's a stressed out little boy who needs relaxation and Cognitive Behavioral Therapy! Or she could be basing her opinion on the Neurologist that we saw in 2007 who said "It may or may not be Tourette Syndrome." I just started giving him Ibuprofen so we'll see if that helps. Link to comment Share on other sites More sharing options...
EAMom Posted December 21, 2009 Report Share Posted December 21, 2009 FYI, here's something on a study Dr. Murphy is doing. http://www.latitudes.org/forums/index.php?showtopic=6210 Link to comment Share on other sites More sharing options...
Tattoomom Posted December 21, 2009 Author Report Share Posted December 21, 2009 If you have a good relationship with her, maybe you could compile as much evidence as you can as well as other supporting info for her to read, and give it all to her in a packet. Show her that you have done your research and know what you are talking about. Give her a list of your child's symptoms that are consistent with PANDAS, give her research studies, give her a bulleted timeline showing the progression of your daughter's illness. Has you daughter had any immunology testing? Was anything off? Give her the Saving Sammy book. If she has email, send her the links to Beth Maloney's interview and the Fox News segment. Give her the article (I've seen it on this forum, maybe someone else can share it) that tells why the antibody titers don't diagnose PANDAS. Give her Buster's Q&A. Maybe then she won't feel "blind." This is exactly what I need to do! I made an appointment with her for a consultation, and I need to get all my information together so I can go in there fully loaded! He had IGG Subclasses done in 2006, before this all started and they were normal. Link to comment Share on other sites More sharing options...
thereishope Posted December 21, 2009 Report Share Posted December 21, 2009 I would have loved to see your reaction to relaxation for his treatment. And CBT is soooo relaxing for a child. So frustrating! So, I'm assuming you're being directed to a psychologist? Ask her if insurance will cover a trip to Hawaii so he can get all the relaxation he needs since she deems that his treatment. What is your ped saying is the diagnosis then? Does your child's symptoms improve at all with Ibuprofen(advil. motrin)? If they do, ask her the explanation for that. She doesn't really offer a "diagnosis," I suppose she just thinks he's a stressed out little boy who needs relaxation and Cognitive Behavioral Therapy! Or she could be basing her opinion on the Neurologist that we saw in 2007 who said "It may or may not be Tourette Syndrome." I just started giving him Ibuprofen so we'll see if that helps. Link to comment Share on other sites More sharing options...
dcmom Posted December 21, 2009 Report Share Posted December 21, 2009 My ped initially told me "positive reinforcement" That's when I dropped them and ran to the experts.... Link to comment Share on other sites More sharing options...
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