911RN Posted May 21, 2011 Report Share Posted May 21, 2011 Hello All, I have been reading forum since Feb, however, this is first time for intro posting. My DS10 is suspected PANDAS. I have entertained seeing Dr Trifilettti (as my first choice) but my read on him is he does not recommend IVIG unless the child is "institution" ready. DS10 is not. I have read that some other docs will consider IVIG if condition causes great disruption for child in academics, socialization and family life. I have 6 years of IEP's and neurological, psychoeducational reports to prove that. That, is DS dilemma. I have read that some docs are better than others at going to bat with the insurances.What I am looking for is knowledgeable PANDAS doc that will guide me the best way for my child's status. I am not opposed to long term antibiotics if that is option they think he can improve on....nor, am I opposed to IVIG if that is the only option for remission and recovery. Private pay or not- we will do what it takes provided that it is a viable option for improvement AND he would respond to just a few treatments. We could not afford repeated IVIG. As long as I can know the pros and cons to make an informed decision with knowledgeable PANDAS provider I can trust. I have tended to be conservative with my child's treatments- do no harm approach- however, after 7 years of symptoms- my husband and I are willing to be a bit more aggressive if it could mean a greater life and outcome for him. My son has been on high dose 500 mg of Azithro daily since March 1st. I live on the East Coast in NC and I am willing to travel from here to the Northeast, as far as NY. He is being treated by his Peds who took a "leap of faith" with me. We were waiting on Cam Kinase II testing but now that program has been shut down DS specimen will not be run. I'm not sure his peds will continue to treat without proof positive of a high Cam Kinase II testing so we need PANDAS doc willing to treat based on symptoms and history. DS has strong strep history- in Spring and Fall nearly yearly that coincide with his exacerbations over the years. He is scheduled to see Dr Larry Morton on June 6th- Neurology in Richmond,Va scheduled 6 months ago prior to PANDAS suspicion. Have no idea if Morton is a PANDAS supporter or naysayer. Our trusted Neuropsychologist recommended Andrew Zimmerman of the Kennedy Kreiger center. I have never seen him mentioned on PANDAS boards?? Anyone have any thoughts on him? I know it would likely take 6+ months to get appt with him and don't really want to wait that long if I don't have to and it would be a dead end road, anyway, if he is a naysayer. My concern is we are being left with the OCD behaviors, moreso, with each exacerbation although tics have improved significantly with long term, high dose Azithro and twice daily Motrin. Not sure what this means in the big picture. Some of his former motor/vocal tics have seemed to morph into his OCD behaviors.These behaviors seem more purposeful and not tissich in nature as it was before. Example- he makes a claw like motion and movements and watches his hand. His OCD behaviors are more compulsive than obsessive- if that makes sense. They change every week- none of it debilitating or pervasive but all of it odd. One week it is time, then handwashing, then smelling stuff, sensory issues (sensitivity to clothing, smells, sounds etc),same food preferences, walking on just certain sqaures in kitchen etc. Lastly, is there any suggestion that these children do well with immunologists or is a good PANDAS treating doc all they need? Thank you, in advance, for any feedback and advice you can give me!Sorry, so long! Sharon Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 21, 2011 Report Share Posted May 21, 2011 Hello All, I have been reading forum since Feb, however, this is first time for intro posting. My DS10 is suspected PANDAS. I have entertained seeing Dr Trifilettti (as my first choice) but my read on him is he does not recommend IVIG unless the child is "institution" ready. DS10 is not. I have read that some other docs will consider IVIG if condition causes great disruption for child in academics, socialization and family life. I have 6 years of IEP's and neurological, psychoeducational reports to prove that. That, is DS dilemma. I have read that some docs are better than others at going to bat with the insurances.What I am looking for is knowledgeable PANDAS doc that will guide me the best way for my child's status. I am not opposed to long term antibiotics if that is option they think he can improve on....nor, am I opposed to IVIG if that is the only option for remission and recovery. Private pay or not- we will do what it takes provided that it is a viable option for improvement AND he would respond to just a few treatments. We could not afford repeated IVIG. As long as I can know the pros and cons to make an informed decision with knowledgeable PANDAS provider I can trust. I have tended to be conservative with my child's treatments- do no harm approach- however, after 7 years of symptoms- my husband and I are willing to be a bit more aggressive if it could mean a greater life and outcome for him. My son has been on high dose 500 mg of Azithro daily since March 1st. I live on the East Coast in NC and I am willing to travel from here to the Northeast, as far as NY. He is being treated by his Peds who took a "leap of faith" with me. We were waiting on Cam Kinase II testing but now that program has been shut down DS specimen will not be run. I'm not sure his peds will continue to treat without proof positive of a high Cam Kinase II testing so we need PANDAS doc willing to treat based on symptoms and history. DS has strong strep history- in Spring and Fall nearly yearly that coincide with his exacerbations over the years. He is scheduled to see Dr Larry Morton on June 6th- Neurology in Richmond,Va scheduled 6 months ago prior to PANDAS suspicion. Have no idea if Morton is a PANDAS supporter or naysayer. Our trusted Neuropsychologist recommended Andrew Zimmerman of the Kennedy Kreiger center. I have never seen him mentioned on PANDAS boards?? Anyone have any thoughts on him? I know it would likely take 6+ months to get appt with him and don't really want to wait that long if I don't have to and it would be a dead end road, anyway, if he is a naysayer. My concern is we are being left with the OCD behaviors, moreso, with each exacerbation although tics have improved significantly with long term, high dose Azithro and twice daily Motrin. Not sure what this means in the big picture. Some of his former motor/vocal tics have seemed to morph into his OCD behaviors.These behaviors seem more purposeful and not tissich in nature as it was before. Example- he makes a claw like motion and movements and watches his hand. His OCD behaviors are more compulsive than obsessive- if that makes sense. They change every week- none of it debilitating or pervasive but all of it odd. One week it is time, then handwashing, then smelling stuff, sensory issues (sensitivity to clothing, smells, sounds etc),same food preferences, walking on just certain sqaures in kitchen etc. Lastly, is there any suggestion that these children do well with immunologists or is a good PANDAS treating doc all they need? Thank you, in advance, for any feedback and advice you can give me!Sorry, so long! Sharon Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 21, 2011 Report Share Posted May 21, 2011 Hi: I also live in NC, in the Triangle area. My 4 year old son has had a DX of PANDAS since he was 2.5, and we have been traveling to Children's Hosp. of Phila. every 8 weeks since last Sept., when he had an acute episode. Dr. Elia heads the Behavioral Health Sciences Center at CHOP is a well known and respected PANDAS specialist. Her expertise lies in PEX, rather than IVig. Both are acceptable off label treatments for PANDAS. Dr. Elia is appropriately conservative, but does not seem fearful of more aggressive treatments when necessary. We are considering IVig in the near future, as we are unable to have PEX due to my son being so small and not having a good "exit vein". IVig is our second choice and we would rather be under the care of Dr. Elia than anyone else during the process. Best wishes and positive thoughts your way! Link to comment Share on other sites More sharing options...
AmySLP Posted May 22, 2011 Report Share Posted May 22, 2011 DR. Latimer in Bethesda, MD or Dr. Bouboulis in Stamford CT, just outside NYC. Never heard mention of these docs you listed. PANDASnetwork aslo can help you with docs. Link to comment Share on other sites More sharing options...
NancyD Posted May 22, 2011 Report Share Posted May 22, 2011 I do know of Dr. Z's work and he is well respected but not for PANDAS. That is not the direction I would go. Like AmySLP I recommend either Dr. L (Bethesda, MD) or Dr. B. (Darien or Stamford, CT -- Darien is where he does IVIg). Both are excellent at getting insurance coverage. I don't know if Dr. L is taking on new patients. Either way, please be sure to get complete immune workup and rule out Lyme and other co-infections thru IGeneX. You could save yourself a lot of precious time (even years). Best of luck to you! Link to comment Share on other sites More sharing options...
chodnett Posted May 22, 2011 Report Share Posted May 22, 2011 Dr.B Link to comment Share on other sites More sharing options...
T_Mom Posted May 22, 2011 Report Share Posted May 22, 2011 (edited) Here is a thread w/ doctors listed that parents have found helpful-- http://www.latitudes.org/forums/index.php?showtopic=5023 We would recommend Dr L -- no doubt. Respected professionally in the Washington DC area, (recognized as a top-doc by other doctors in the Washingtonian Magazine.) Mainline, experienced, compassionate, in touch re: Ps. Edited May 22, 2011 by T.Mom Link to comment Share on other sites More sharing options...
dcmom Posted May 22, 2011 Report Share Posted May 22, 2011 If you are thinking you want ivig, and you want to maximize your chance at getting it covered by insurance- Dr B is your best choice. Link to comment Share on other sites More sharing options...
911RN Posted May 22, 2011 Author Report Share Posted May 22, 2011 THANK YOU, THANK YOU for all your replies for docs and tidbits of advice! I will be making some calls in the morning:) Will keep board posted once things get rolling. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 22, 2011 Report Share Posted May 22, 2011 Since I wrote about Dr. Elia, I have read posts from parents who have not been happy with her care. I advocate that you educate yourself re: diff. docs, as they have diff. schools of thought re: treatment. I certainly do not have tunnel vision and I have sought other docs for other ideas as well, in conjunction with Dr. Elia being primary specialist at this time. I will continue to do so, although for the stage in which we are currently. Dr. Elia is working with us well. Good luck! Link to comment Share on other sites More sharing options...
Stephanie2 Posted May 22, 2011 Report Share Posted May 22, 2011 (edited) We started out with Scott Smith PA in New Jersey and Dan Rossignol, MD in Florida, both very thorough and competent, we got great results, both have pandas boys of their own, both on PANDAS Resource Network Medical Advisory Board. They practice integrative medicine, which means they will do all the standard pandas therapies including ivig, but they also integrate supplements to support the immune system and other functions in the body which affect pandas. They will also test the gut periodically to make sure secondary infections (ie yeast or clostridia due to chronic abx use) are kept in check, which can cause a whole new set of behavioral symptoms, this is an area that most pandas docs miss and is crucial for the success of treatment for some kids. After awhile, though, my sons developed severe side effects to antibiotics and steroids, and IVIG was not covered by insurance. I was forced to seek out a well-respected homeopath in NYC who has a great reputation within the autism/pandas community, Pierre Fontaine. Pierre has a one year wait list, but he has a new colleague working with him who we now use, Angelica Lemke. We have had more success in the last 3 months with less meds and doctor visits than we have had in the last 4 years of this nightmare (actually my boys are off all meds, abx, steroids, ibuprofen, immune modulators, psych meds, etc.). Both of my boys have responded tremendously and have withstood strep exposures in the meantime. Edited May 22, 2011 by Stephanie2 Link to comment Share on other sites More sharing options...
T_Mom Posted May 22, 2011 Report Share Posted May 22, 2011 (edited) ...We have had more success in the last 3 months with less meds and doctor visits than we have had in the last 4 years of this nightmare (actually my boys are off all meds, abx, steroids, ibuprofen, immune modulators, psych meds, etc.). Both of my boys have responded tremendously and have withstood strep exposures in the meantime... That is great to hear Stephanie -- but you have told us everything that they are not on, what are they on? What is working so well for you now? Specifics please:) Edited May 22, 2011 by T.Mom Link to comment Share on other sites More sharing options...
Stephanie2 Posted May 23, 2011 Report Share Posted May 23, 2011 (edited) ...We have had more success in the last 3 months with less meds and doctor visits than we have had in the last 4 years of this nightmare (actually my boys are off all meds, abx, steroids, ibuprofen, immune modulators, psych meds, etc.). Both of my boys have responded tremendously and have withstood strep exposures in the meantime... That is great to hear Stephanie -- but you have told us everything that they are not on, what are they on? What is working so well for you now? Specifics please:) We do classical homeopathy which consists of the patient receiving one "constitutional remedy" which is prescribed based on the patient's specific symptoms and overall "constitution". The remedy does not directly kill any particular microbes, but it stimulates the body to heal itself. There are over 3500 homeopathic remedies that the homeopaths choose from so the reason I don't usually mention my boys' remedy is b/c I don't want a bunch of people running to whole foods and buying it and having no idea how to dose it or even if it is the appropriate remedy for them. Not to mention the potency needs to be increased at intervals which is a decision that needs to be made with the homeopath and the increased potencies are normally ordered from London (increasing too soon can run the case into the ground, etc.). Very complicated. But with all that said, my boys are on a remedy called Ignatia Amara I do have a friend who tried it just based on my boys' results and she got immediate results (stopped raging and became completely placid within 20 minutes and stayed that way for a few days). But her son happens to be very similar to my boys in their pandas presentations. There really is no way someone could maintain those results without a homeopath... Oh, and my boys are also still on some supplements from our biomed days: Vit. D, Vit. C., TMG, Folinic Acid, Fish Oil, probiotics, magnesium, vit. e, multivitamin, off the top of my head (some of that is for my younger son's speech apraxia, though). Edited May 23, 2011 by Stephanie2 Link to comment Share on other sites More sharing options...
beeskneesmommy Posted May 23, 2011 Report Share Posted May 23, 2011 Stephanie - thank you - this is the type of info that I have been looking for as I want to integrate traditional & alt. medicine. Testing D levels and the addition of Oscillium and Omega gummy bears has been recommended in his treatment thus far, but that is it. I know there is more out there but I have not known where to start and I do not feel safe walking into Whole Foods for advice! Clearly, I need to get more aggressive in seeking a team, rather than a primary with occasional other consults. Wish I knew about this forum a long time ago. My son has had PANDAS for over 2 years and I just found ACN! Link to comment Share on other sites More sharing options...
Kayanne Posted May 23, 2011 Report Share Posted May 23, 2011 I have only taken my daughter to Dr. Latimer. I would highly recommend her. Link to comment Share on other sites More sharing options...
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