PANDASmcnuggetsw/fry/coke Posted September 1, 2010 Report Share Posted September 1, 2010 Hi friends, We are needing to add another specialist to our team before we go down the road of IVIG and while we are fortunate enough to have one specialist on our side already, we need more info on what the others do and don't do before adding another to our team. The areas we need info on are IVIG or PEX, ABX and steroid burts, beyond the 5-day diagnostic tool. It is my understanding that Dr L ONLY does pex. I know Dr B does IVIG. Does he do pex too? and Dr K? Dr T? Who does and does NOT do ABX (and I mean before IVIG/PEX as a line of treatment itself)? Steriod bursts? Please fill in my gaps of knowledge as you are able. Also, while I hear they are mostly all great, I welcome personal experience either on the board on by pm. Things are going downhill here fast and I need to move on decisions quickly. Thank you so much, PANDAS McNuggets w/fry/coke Link to comment Share on other sites More sharing options...
Worried_Dad Posted September 1, 2010 Report Share Posted September 1, 2010 Dr. K has been our son's "go-to" doc for PANDAS. He definitely prescribes abx but is more conservative in this arena (both in dose and duration) than some of the other "PANDAS rock stars," from what I've read here. (Although I think recent experiences with augmentin XR for "recalcitrant cases" may be softening his position on this.) He uses steroid bursts (5-day prednisone for our son) as a diagnostic tool only, not as a treatment option. IVIG is his preferred treatment at high dose (1.5 g/kg over 2 days, generally). Although he mentioned to me that he believes PEX may be more beneficial than IVIG for PANDAS kids with severe tics but little/no OCD, he does not order or administer it. In his experience, OCD is almost always a significant factor and - for most of his patients - the most debilitating symptom. Hope that helps! Link to comment Share on other sites More sharing options...
dcmom Posted September 1, 2010 Report Share Posted September 1, 2010 Dr L is the only doc that can/will do it all: try different abx ivig and pex steroid bursts in varying lengths as part of treatment She is flexible, and tailors treatment to what works for each child. Link to comment Share on other sites More sharing options...
laure Posted September 1, 2010 Report Share Posted September 1, 2010 Dr L is the only doc that can/will do it all: try different abx ivig and pex steroid bursts in varying lengths as part of treatment She is flexible, and tailors treatment to what works for each child. Who is Dr L? How can I contact her? Desperate for help in central NY! Link to comment Share on other sites More sharing options...
momoffive Posted September 1, 2010 Report Share Posted September 1, 2010 Hi friends, We are needing to add another specialist to our team before we go down the road of IVIG and while we are fortunate enough to have one specialist on our side already, we need more info on what the others do and don't do before adding another to our team. The areas we need info on are IVIG or PEX, ABX and steroid burts, beyond the 5-day diagnostic tool. It is my understanding that Dr L ONLY does pex. I know Dr B does IVIG. Does he do pex too? and Dr K? Dr T? Who does and does NOT do ABX (and I mean before IVIG/PEX as a line of treatment itself)? Steriod bursts? Please fill in my gaps of knowledge as you are able. Also, while I hear they are mostly all great, I welcome personal experience either on the board on by pm. Things are going downhill here fast and I need to move on decisions quickly. Thank you so much, PANDAS McNuggets w/fry/coke we saw Dr T recently and he is good w/ finding infections and treating w/ abx. he does not do PEX or IVIG. he does do steriod bursts. Link to comment Share on other sites More sharing options...
PANDASmcnuggetsw/fry/coke Posted September 1, 2010 Author Report Share Posted September 1, 2010 Thanks everybody! Does Dr T do tapered burst and the 5 day type? PANDAS McNuggets w/fry/coke Link to comment Share on other sites More sharing options...
dee45 Posted September 1, 2010 Report Share Posted September 1, 2010 Dr l is Dr. Latimer she is in Betheseda Maryland 301-530-9200 Deanna Link to comment Share on other sites More sharing options...
susie Posted September 1, 2010 Report Share Posted September 1, 2010 (edited) we saw Dr T recently and he is good w/ finding infections and treating w/ abx. he does not do PEX or IVIG. he does do steriod bursts. Dr. T. told me that IVIG is an option if antibiotics don't work. I was also able to get a phone consultation with him quickly and get help quickly until the appointment with our local pandas specialist (took about 2 months to get in with her). He's very kind and caring, and is my hero for helping my kid so quickly. Just be patient with him, he doesn't really have an office staff to help him out with paperwork, answering emails and those sorts of things. Edited September 1, 2010 by susie Link to comment Share on other sites More sharing options...
thomasmom Posted September 2, 2010 Report Share Posted September 2, 2010 Dr l is Dr. Latimer she is in Betheseda Maryland 301-530-9200 Deanna Is it hard to get an appointment with Dr. Latimer ? How long is the wait time ? Link to comment Share on other sites More sharing options...
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