Janny Posted January 10, 2014 Report Share Posted January 10, 2014 Went to chop ( childrens hospital of Philadelphia) for my sons appt with dr. Jason Kim and he basically said that any doctor treating pandas is selling you false hope and taking your money. And that my sons intrusive thoughts and many other symptoms even with a positive test for strep is in the field of mental health and to keep seeing his psychiatrist. We got no where fast! So frustrated.....not sure where to turn. Any help would be great. Thanks friends. ~ Janny Link to comment Share on other sites More sharing options...
bigmighty Posted January 10, 2014 Report Share Posted January 10, 2014 Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight. Janny, qannie47 and Hrosenkrantz 3 Link to comment Share on other sites More sharing options...
philamom Posted January 10, 2014 Report Share Posted January 10, 2014 (edited) Agree! I'm so glad I didn't follow CHOP's advice...wouldn't be where we are today. edit - I recommended a pediatrician not to far from you on your other post. We travel to CT for our daughter's care. Edited January 10, 2014 by philamom Janny 1 Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted January 10, 2014 Report Share Posted January 10, 2014 Sometimes it doesn't matter how many credentials a person has hanging on their walls, their perspective and/or "advice" isn't worth the paper or ink those credentials required for production! Follow your gut, your instincts. And get to a different doctor. When someone comes off this opinionated (in the negative) about PANDAS in the face of a positive strep test and a classic behavior set, despite the peer-reviewed and published research from the NIMH, he's either willfully ignorant or grinding an ax. You'll be wasting your time arguing with him or trying to enlighten him. On the pinned threads of this forum, you'll find providers in your area who are equipped and willing to help you. And welcome to the forum! searching_for_help, Janny and nicklemama 3 Link to comment Share on other sites More sharing options...
pr40 Posted January 10, 2014 Report Share Posted January 10, 2014 what's really frustrating is that this dr does not ask himself what mental illness is. are there many kinds? how is it connected to immune system and how to digestive system? how can it be managed given the complex relation with immune system and stomach? etc. in my mind, most "specialists" are just that "specialists" and we, Pandas parents, need to educate ourselves to be able to manage our children's care since, obvisously, "specialists" are not going to do it for us. this is then not to say that my children don't have "mental illness" but that what they have is wastly different than what this dr assume under that term. Janny and qannie47 2 Link to comment Share on other sites More sharing options...
Rachel Posted January 10, 2014 Report Share Posted January 10, 2014 So sorry about your appointment. I would encourage you to find a doctor that specializes in PANS/PANDAS. I found a doctor in Texas but thats a really long drive for you. I am new to this forum but there is a post about doctors that specialize in PANS/PANDAS. Rachel Janny 1 Link to comment Share on other sites More sharing options...
qannie47 Posted January 10, 2014 Report Share Posted January 10, 2014 I guess there are the trail makers and the ones that just follow them. Thank goodness for our brave doctors who have dared unchartered territory. Truly, they will be on the short list with all those before them, whom have contributed our greatest breakthroughs in medicine. Janny and 3boysmom 2 Link to comment Share on other sites More sharing options...
Teri Posted January 10, 2014 Report Share Posted January 10, 2014 So sorry for the wasted time, $, and disappointment. Not that surprised but the CHOPS Dr. Is narrow minded. If I were you I would see a Dr. that can at least get you moving towards healing. See you're previous post about your son's bloodwork .... And the responses that follow. There is a local Pediatrician out of Yardley Ped. that may be able to help get you started on some abx. She is my Dd's Pediatrician. Bring lab work. If you rally feel like its PANDAS that you are dealing with .... I would also schedule an appointment with a PANDAS specialist ASAP (Dr.T in North NJ or Dr. B in Conn.). Dr.B manages my dd PANDAS. Most of us that have been in this boat have had similar experiences. Ours happened to be with a Pediatric Neurologist at St. Christopher's who we saw to rule out any neurological causes for Dd's sudden onset of tics at 5 yrs old. She brilliantly told us "Some kids have tics, some kids don't." Thanks Doc! Don't give up! Teri Janny 1 Link to comment Share on other sites More sharing options...
ibcdbwc Posted January 10, 2014 Report Share Posted January 10, 2014 (edited) So interesting that many doctors do not think beyond the term "mental illness." Are they too narrow minded to ask themselves "...what causes mental illness?" I personally suspect ALL mental illness is in one way or another caused by a variety of factors certainly not limited to infection, inflammatory response or autoimmune dysfunction. Why in the world would doctors be against searching and looking for all possible triggers and thus solutions? PANDAS/PANS is the tip of a very large iceberg. Why are they so afraid to step on board? With every generation there are medical advances - I simply fail to understand when a doctor shakes his head and says "no. couldn't be." They, in my opinion, are not masters of the ART of medicine. They are simply robots with a defect perhaps - mental rigidity. It's their problem-- not ours. Move on, keep searching - the best advice I've recently received is to cover all the bases - don't let docs force to you look through just one narrow lens. Nothing in life is simple. Look wide. Edited January 10, 2014 by ibcdbwc MomWithOCDSon and Janny 2 Link to comment Share on other sites More sharing options...
Guest Posted January 10, 2014 Report Share Posted January 10, 2014 This happened to me about 4 months at mayo clinic, rochester. The doctor told me nothing was really wrong, I just needed to see another psychiatrist and I did have chronic fatigue syndrome but they treat that with "5 day classes on managing fatigue." I ended up leaving and not seeing anyone! He was supposed to be a renowned neurologist and dysautonomic specialist, even though I have 2 tilt table tests (definitive proof) that I have terrible POTS, he said it was b/c "I laid in bed too much". I had a mental breakdown in the hotel. But I tried to maintain strength for my mother after all we sacrificed. Fast forward, everything went well with the doctors at NYU. Funny the mayo doctor said there's no evidence of "encephalitis" and after 2 brain scans, I was diagnosed with clinical encephalitis. Some doctors have a lot of credentials and a lot of arrogance. I don't know what to suggest other than, it happens to all of us. But there surely is someone who can help. Link to comment Share on other sites More sharing options...
qannie47 Posted January 10, 2014 Report Share Posted January 10, 2014 HI Ophelia! Glad to see you pop up! I have been wondering how you were doing! Link to comment Share on other sites More sharing options...
Janny Posted January 11, 2014 Author Report Share Posted January 11, 2014 Again thank you all so much for taking the time to write back this group is so helpful! Link to comment Share on other sites More sharing options...
putting together the piece Posted January 12, 2014 Report Share Posted January 12, 2014 Hi Janny There is a doctor in Towson Md that is a Pandas doc and he was able to get rid of my DS's intrusive thoughts. It was such a relief to have those thoughts go away! My DS made a lot of progress in that office and the doctor is brilliant. Pm me if you want his information. Link to comment Share on other sites More sharing options...
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