momto2pandas Posted July 3, 2010 Report Share Posted July 3, 2010 For those of you in Southern Cal who have struggled to find local PANDAS treatment for your kids... We tried to call UCLA a while back to find someone with expertise in PANDAS, and failed - I think that the people at the desk must not have known what we were talking about, or somehow we must have gotten the wrong department. Today, for (long story) insurance reasons, we went to the pediatric immunology department there to see an immunologist about my kids' immune deficiencies. I was prepared to have to make arguments about why they get higher than usual doses of IVIG, why they're still on antibiotics, explain how treatment for immune deficiencies intersects with treatment for PANDAS, etc. - and I was not looking forward to it. Lo and behold, I mentioned PANDAS to Dr. McGee and he knew exactly what I was talking about, didn't even consider it controversial. They treat PANDAS there regularly. He agreed completely with Dr. B's IVIG dosing regime and although he wants to try a trial with them off of antibiotics soon (they have been clear of infections for quite a while now), he said that if there were any problems at all, he'd put them right back on. I asked if they treated PANDAS in patients withOUT immune deficiencies, or if they only saw it as a feature of some of their immunodeficient patients. He said that Dr. Steam (sp?) there has a lot of PANDAS patients without immunodeficiencies. He generally starts treatment with antibiotics, but he believes that Dr. Steam also gives IVIG for PANDAS in some cases, even without immunodeficiency. And of course at UCLA, they participate in just about every insurance. They do the IVIG as part of a doctor visit, so for us, the fee is only $40 per kid per treatment - insurance picks up the rest. Link to comment Share on other sites More sharing options...
kimballot Posted July 3, 2010 Report Share Posted July 3, 2010 YOU HIT THE PANDAS JACKPOT! Too bad I live on the other end of the Country! So happy for you and everyone else in Southern California!! Link to comment Share on other sites More sharing options...
pathfinder Posted July 3, 2010 Report Share Posted July 3, 2010 You have been like a guiding light for me. Thank you so much. I am calling UCLA first thing Monday. thank you again. Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2010 Report Share Posted July 3, 2010 I know Mama2alex saw a UCLA immunologist a while back...didn't seem to hit jackpot though? maybe it depends who you see? Or maybe her PANDAS diagnosis wasn't certain at that point? Link to comment Share on other sites More sharing options...
momto2pandas Posted July 3, 2010 Author Report Share Posted July 3, 2010 Don't know. Keep in mind that my kids' PANDAS is "classic" - sudden onset, classic symptoms (albeit mild), associated with Strep, responds to abx and steroids, context of immune deficiency and other autoimmune conditions, etc. - so they have the least controversial kind of PANDAS. We didn't talk about Mycoplasma or anything like that, so I don't know their take on that. Still, I thought the info was useful. For us, it would have been very useful to have known about this group 2 years ago. I thought Mama2alex went to UC Irvine and was disappointed, no? Was it UCLA? Link to comment Share on other sites More sharing options...
EAMom Posted July 3, 2010 Report Share Posted July 3, 2010 I looked at an old post...UCLA. There were other folks that had lack of sucess with UC Irvine. Link to comment Share on other sites More sharing options...
parents4eyes Posted July 3, 2010 Report Share Posted July 3, 2010 (edited) x Edited July 17, 2010 by parents4eyes Link to comment Share on other sites More sharing options...
momto2pandas Posted July 3, 2010 Author Report Share Posted July 3, 2010 No, it was not a private office but part of the UCLA medical center. I believe that that immunology practice also does rheumatology but I'm not 100% sure. I think you will need a rheumatologist (or GI specialist or dermatologist if she has those issues) if you are looking for treatment with the biologics at this point. Here is Dr. Stiehm. We didn't see him but I was told that he was the main PANDAS doc. I think you could get Dr. McGhee at the same number. http://www.uclahealth.org/body.cfm?id=479&...il&ref=3021 If you become really pressed to find a good pediatric rheumatologist, let me know and I'll do some networking. I worked in pediatric rheumatology for a while, before I knew anything about PANDAS. I can't think of anyone I knew in SoCal but I could probably track down a recommendation for a good one, though I doubt that my contacts would know their take on PANDAS. I will be talking to Dr. McGhee next Wed and will try to remember to ask him who he knows as well. For those of you in Southern Cal who have struggled to find local PANDAS treatment for your kids... Lo and behold, I mentioned PANDAS to Dr. McGee and he knew exactly what I was talking about, didn't even consider it controversial. They treat PANDAS there regularly. He agreed completely with Dr. B's IVIG dosing regime and although he wants to try a trial with them off of antibiotics soon (they have been clear of infections for quite a while now), he said that if there were any problems at all, he'd put them right back on. And of course at UCLA, they participate in just about every insurance. They do the IVIG as part of a doctor visit, so for us, the fee is only $40 per kid per treatment - insurance picks up the rest. We personally didn't know about it because past experiences (pre-pandas) at UCLA have been so horrible that my kids refuse to go back. Your news is good, though. The more physicians we have to help the better. I couldn't find Dr. McGhee on the UCLA physician list. Is he in a private office? Since we are talking about So. Cal doctors, does anyone know of a pandas friendly rheumatologist (preferably south of LA)? Or any other (pandas friendly) doctor who will prescribe immunosuppressants/ antiTNFs/ biologics (i.e. humira, cellcept, methotrexate). We are in much bigger than just pandas (unkown autoimmune) and may need to go that route to save my daughter's vision. Link to comment Share on other sites More sharing options...
deby Posted July 3, 2010 Report Share Posted July 3, 2010 I went to see Dr. Stiehm around 3 weeks ago, he treated some kids with Pandas ( not many) and did some IVIG to some of those kids. He is not an aggressive doctor, means that if your kid show signs of pandas (high titers + ocd/tics that appear suddenly) he will give abx for a short period of time, then he will prescribe some prophilactic abx for some time (around 4 months) and then if nothing help maybe he will start talking about IVIG. He will not go fast to that approach. He complained a lot about the insurances giving him hard time and a lot of bureaucracy to approve and IVIG. I can not say that I was really happy with him, also because his social skills specially with the kids are not the best. He also recommended some medications for the tics (Neurotin) something most of the people are against, proven that it doesn't really help, and there a re a lot of side effects for taht. In the other hand, I don't have other option that I know here in around LA. I wonder if any one knows a good integrative physician, somebody who can guide me in nutrition, supplements etc. Link to comment Share on other sites More sharing options...
Phasmid Posted July 4, 2010 Report Share Posted July 4, 2010 We actually started at UCLA with a noted immunologist there who was willing to order tests but was not the classic case, as his titers normal. However, he had already been on antibiotic for months. He siad since titers were normal it was not PANDAS. I will provide name in PM, if curious. Link to comment Share on other sites More sharing options...
EAMom Posted July 4, 2010 Report Share Posted July 4, 2010 have you tried dr. lin? this is from the Consolidated dr. list by state: Thomas Lin, M.D. UCLA Board Certified Pediatrician Gave us a diagnosis when no one else could. Very friendly, easy to talk to, and seemed to know PANDAS quite well. His son is autistic and has OCD symptoms. Believes in infections other than strep causing issues too. No treatment protocol to post yet. 4634 Barranca Pkwy Irvine, CA 92604 office: 949-681-0777 fax: 949-681-0788 www.irvinekidsmd.com e-mail: autismmd@cox.net Link to comment Share on other sites More sharing options...
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