monarchcat Posted June 26, 2010 Report Share Posted June 26, 2010 Can't say enough good things about him. He was wonderful. Listened to us, looked at all our notes and info and results, developed a plan, ordered blood work, etc... my husband and I just sat there and breathed huge sighs of relief. The upshot is that DS9 will be on full strength azith for awhile, and DD3 will be on prophylactic azith for at least a year. (we caught her first episode early and nipped it in the bud with treatment-dose azith for 6 weeks, prescribed by our ped who is great but knows very little about PANDAS). DS could be a candidate for IVIG, but he wants to see the blood work results (immune workup, etc) and he wants to see how he responds to the azith for a month or so. He's been doing really well lately, so we may be on a healing trend anyway. But if IVIG is needed, we have Dr. B in our corner to guide us. It's a great feeling for sure. It was so WONDERFUL to sit with someone who truly gets PANDAS and is totally invested in helping our kids. Funny tidbit.. He looked at DS's Cunningham results and sat for a moment and said, "Wow... Wow... WOW!" I cracked up. It was so nice to have someone who knew what they were looking at! In fact, when we got to the office, the receptionist asked if we had done any Cunningham testing. Link to comment Share on other sites More sharing options...
kimballot Posted June 26, 2010 Report Share Posted June 26, 2010 Yes - I know what you mean! When you talk to a PANDAS Doc it is like you are speaking the same language! How refreshing! Link to comment Share on other sites More sharing options...
saidie10 Posted June 26, 2010 Report Share Posted June 26, 2010 Yes - I know what you mean! When you talk to a PANDAS Doc it is like you are speaking the same language! How refreshing! that is great news! it must be a great feeling to finally feel like you are on the right path with a good doctor leading you! Link to comment Share on other sites More sharing options...
T_Mom Posted June 27, 2010 Report Share Posted June 27, 2010 Monarchcat--Wonderful news! Can you remind us what the numbers were for the Cunningham results--and did Dr B say how long for the antbiotics? So glad you got in to see him!!! Link to comment Share on other sites More sharing options...
monarchcat Posted June 28, 2010 Author Report Share Posted June 28, 2010 His CamKII was 193 and 3 out of 4 anti-neuronal antibody levels were elevated (D2 was normal). I don't have the numbers in front of me. DS will be on 500mg/day of azith for at least the next month while we wait for blood results and after that Dr. B. will decide if IVIG is warranted. He said perhaps he'll do well on just the antibiotics and not need IVIG, but that probably to really get to the root of the problem, IVIG would be needed. He seemed to indicate that the azith dose would be long term, but that we would focus on the short term to see what the blood tests show. Monarchcat--Wonderful news!Can you remind us what the numbers were for the Cunningham results--and did Dr B say how long for the antbiotics? So glad you got in to see him!!! Link to comment Share on other sites More sharing options...
melanie Posted June 29, 2010 Report Share Posted June 29, 2010 Im seeing him next week.I sent all of dannys info and have asked several tiimes if theres anything else we need ,blood work etc.He seems very busy Im driving 2 hrs I hop its not for nothing.I already know hes PANDAS and he gets monthly IV I want to see if he can up the dosage and if he thinks its necessary. Melanie Link to comment Share on other sites More sharing options...
kimballot Posted June 29, 2010 Report Share Posted June 29, 2010 Bring any bloodwork, tests, or other doctor notes with you in case you need to refer to them. I try to keep mine organized in an accordian style file so I can get to them quickly while we are talking. Dr. B can make copies there if he decides to keep something in his file. From the discussions on this board, I think Dr. B is quite busy, but I've found his staff to be very efficient and we have found that he spends a good bit of time with us when we are there and really considers each individual case before coming up with a plan. You may not leave with a prescription for higher dose IVIG. You may leave with prescriptions for more tests. I do think, though, that you will leave with Dr. B's honest appraisal of your son. Link to comment Share on other sites More sharing options...
melanie Posted June 30, 2010 Report Share Posted June 30, 2010 Bring any bloodwork, tests, or other doctor notes with you in case you need to refer to them. I try to keep mine organized in an accordian style file so I can get to them quickly while we are talking. Dr. B can make copies there if he decides to keep something in his file. From the discussions on this board, I think Dr. B is quite busy, but I've found his staff to be very efficient and we have found that he spends a good bit of time with us when we are there and really considers each individual case before coming up with a plan. You may not leave with a prescription for higher dose IVIG. You may leave with prescriptions for more tests. I do think, though, that you will leave with Dr. B's honest appraisal of your son. dannys had 8 infusions so all blood work would be false due to that right? Im having second thoughts sabout going to see him. melanie Link to comment Share on other sites More sharing options...
justinekno Posted June 30, 2010 Report Share Posted June 30, 2010 We saw Dr. B. and really liked him. He was our third opinion (but first immunologist) and I found it to be a very helpful visit. He took his time, looked over all of our paperwork, and did not rush us. He may not want to order more bloodwork until he sees your son and gets the chance to review and discuss the tests you have already done. dannys had 8 infusions so all blood work would be false due to that right? Im having second thoughts sabout going to see him. melanie Link to comment Share on other sites More sharing options...
kimballot Posted June 30, 2010 Report Share Posted June 30, 2010 Just bring what you have if it is available and relax. Dr. B will order anything he needs if you do not have it. If you have it and he can use it - great. Otherwise, I would not worry too much. Link to comment Share on other sites More sharing options...
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