Malke Posted February 25, 2011 Report Share Posted February 25, 2011 Went today to see a new ped 1hr away who is handling our possible PANDAS. 3 weeks previously she had given us a 3 month Rx for zith and ordered blood tests. Today she looked at dd5 in person, no problems in lungs, ears, nose, throat, etc. All bloodwork came back normal, no EBV, no thyroid issue. We basically knew all that, but now it's confirmed that dd is a healthy sick kid, at least in medical terms. No allergies, no recurrent lung issues, no sinus stuff, no chronic ear infections, 'only' gut issues. So, I asked 'what's next?' and asked about a referral to an immunologist. Ped agreed and nurse called Riley (children's hospital in Indianapolis) and it turns out the only doctor who works with PANDAS kids is a neurologist by the name of Dr. Deborah Sokol. I specifically mentioned to ped I wanted an immunlogist because we are not 100% sure it is PANDAS (no real strep 'event' trigger) and I want to rule out as many other things as possible, including lyme. There are only two pediatric allergy/immunologists at Riley, so I'm assuming neither of them wanted to deal with my daughter. I'm not sure what to do now. Should I call the ped back and say, please call again -- we're not sure what's going on with dd is PANDAS but it clearly has an autoimmune component so immune complex panel looks like the next step? The ped seemed to understand my request, but it seems to have been lost in translation (last appointment on Friday, things running late, ped needed to go, etc.) Also, I'm not sure a neurologist would get me anywhere. I want to know what is or is not going on in dd's blood/immune system. Plus, she can't see us until April. I'm thinking I might just start looking for an integrative MD who can order me the same tests (??) including the Igenex and/or the C protein markers for lyme. Any thoughts would be greatly appreciated, Malke Link to comment Share on other sites More sharing options...
Bill Posted February 25, 2011 Report Share Posted February 25, 2011 Went today to see a new ped 1hr away who is handling our possible PANDAS. 3 weeks previously she had given us a 3 month Rx for zith and ordered blood tests. Today she looked at dd5 in person, no problems in lungs, ears, nose, throat, etc. All bloodwork came back normal, no EBV, no thyroid issue. We basically knew all that, but now it's confirmed that dd is a healthy sick kid, at least in medical terms. No allergies, no recurrent lung issues, no sinus stuff, no chronic ear infections, 'only' gut issues. So, I asked 'what's next?' and asked about a referral to an immunologist. Ped agreed and nurse called Riley (children's hospital in Indianapolis) and it turns out the only doctor who works with PANDAS kids is a neurologist by the name of Dr. Deborah Sokol. I specifically mentioned to ped I wanted an immunlogist because we are not 100% sure it is PANDAS (no real strep 'event' trigger) and I want to rule out as many other things as possible, including lyme. There are only two pediatric allergy/immunologists at Riley, so I'm assuming neither of them wanted to deal with my daughter. I'm not sure what to do now. Should I call the ped back and say, please call again -- we're not sure what's going on with dd is PANDAS but it clearly has an autoimmune component so immune complex panel looks like the next step? The ped seemed to understand my request, but it seems to have been lost in translation (last appointment on Friday, things running late, ped needed to go, etc.) Also, I'm not sure a neurologist would get me anywhere. I want to know what is or is not going on in dd's blood/immune system. Plus, she can't see us until April. I'm thinking I might just start looking for an integrative MD who can order me the same tests (??) including the Igenex and/or the C protein markers for lyme. Any thoughts would be greatly appreciated, Malke I am definitely not an expert but I would think that an immunologist would be the better way to go. Having said that though, we've had multiple neurologist and have seen one immunologist. Most of the neurologists were a waste of time while one was excellent (to a point). I do not have enough experience with the immunologist but everything seems to be PANDAS to him. It's not clear to me who comes out on top. I really think it comes down to the doctor. So I guess my thoughts would be to find a great doctor who can also advocate for you as needed. (I know - easier said than done.) bill Link to comment Share on other sites More sharing options...
amyjoy Posted February 26, 2011 Report Share Posted February 26, 2011 It all depends on who you go to...there are some pandas literate pediatric neuro and neuropsych people but the standard ones may see things differently. We use a pediatrician who is pandas literate, and found that the immunologist we went to was way less than helpful and even a waste of time and resources, for us. there are some threads on this forum that include hundreds of referrals by area but i do not know how to locate them. Link to comment Share on other sites More sharing options...
EAMom Posted February 26, 2011 Report Share Posted February 26, 2011 I wonder if she is any relation to Mae Sokol? http://query.nytimes.com/gst/fullpage.html?res=9A00E4DC173AF931A15752C1A9619C8B63 Link to comment Share on other sites More sharing options...
mommakath Posted February 26, 2011 Report Share Posted February 26, 2011 Any way you can get to Dr. B? VERY impressive immunologist who totally gets PANDAS. Many on this forum see him. He runs immunulogical testing and those are tests a non-pandas kid would get. It helps prove the immune side of it. We have been VERY pleased with him and we started with a nuerologist but felt it wouldn't hurt to get an immunologist as second opinion. Because we do not have any nuero symptoms, we are sticking with him. THe more I walk this out, the more I wish I'd gotten to the experts sooner!! jfarrell 1 Link to comment Share on other sites More sharing options...
MimiMomma Posted January 1, 2014 Report Share Posted January 1, 2014 Malke, did you end up trying out Dr. Sokol? I'm trying to find a good doctor in the Indianapolis area who treats PANDAS in kids. Link to comment Share on other sites More sharing options...
Hopeny Posted January 2, 2014 Report Share Posted January 2, 2014 My experience has been that only a Lyme literate practitioner can properly assess Lyme. Most immunologists are not experienced enough with Lyme and co., though Dr B is as good as it probably gets in terms of an immunologist who can evaluate for Lyme too. Try calling ilads.org for a Lyme literate practitioner who is in your area. All the best Link to comment Share on other sites More sharing options...
searching_for_help Posted January 2, 2014 Report Share Posted January 2, 2014 I can pm you with the name of a nurse practitioner who tests for Lyme in the northern part of Indy. She's the only one who's been willing to do any testing for us. Link to comment Share on other sites More sharing options...
searching_for_help Posted January 2, 2014 Report Share Posted January 2, 2014 Just realized this was an older post. But I will pm you, mimimomma. Link to comment Share on other sites More sharing options...
pr40 Posted January 3, 2014 Report Share Posted January 3, 2014 good neuro will test for lyme. besides, once you are in and PANDAS is accepted as a possibility, you can ask to be seen by other drs and seek second opinion. It is normal, in this day and age, to have a team from the same hospital working with you. I would start treatment asap. Augmentin, in my experience, is usually the first choice, Zythro the second -- our kids are on both. if a nuro is open to PANDAS, she is open to all sorts of auto-immune issues. Link to comment Share on other sites More sharing options...
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