browneyesmom Posted December 20, 2010 Report Posted December 20, 2010 Ok, so first thing this am, I secured an appt with Dr. B in CT for early Feb. I'd welcome any input about him or anything I might do to prepare us for this appointment. We are out of state for this doc, so I want to be as prepared as possible to make the most of our visit with him. I do plan to bring results of labs she has had done.
JAG10 Posted December 20, 2010 Report Posted December 20, 2010 Ok, so first thing this am, I secured an appt with Dr. B in CT for early Feb. I'd welcome any input about him or anything I might do to prepare us for this appointment. We are out of state for this doc, so I want to be as prepared as possible to make the most of our visit with him. I do plan to bring results of labs she has had done. You can ask the receptionist to send or fax you the list of labs he likes done for his PANDAS patients, it's something like 23 different labs. He will not order them for you ahead of time, but if you can get your pediatrician to order them, then you will get more out of the appt. If you can't get a doc to order them, then he will order tham at your child's first appt.
NancyD Posted December 20, 2010 Report Posted December 20, 2010 I second this recommendation. We did all the labs well in advance, including the Lyme and co-infection panel, and it made a world if difference. From there his office staff got approval from our insurance company for IVIg and the next visit was for an infusion. It was all very efficient and fairly quick. Otherwise there would have been one more visit sandwiched in between. Nancy
monarchcat Posted December 21, 2010 Report Posted December 21, 2010 We did an initial visit for both kids and Dr. B. spend over an hour with us. He is very generous with his time, so don't be impatient if you find yourself waiting awhile in the waiting room (we waited a little over an hour but it was well worth it). We hadn't had the labs done beforehand, so he sent us home with lab slips. I opted to do a follow up visit via a phone conference to go over the labs and discuss the next steps. The only downside to that is that Insurance won't cover phone consults so it was $200 out of pocket (but it would have cost more to drive down again, etc as we are about 3 1/2 hours away). We just returned to Dr. B's last week for my son's first IVIG. Dr. B is wonderful and his staff are very caring and helpful. You'll be in good hands.
browneyesmom Posted December 21, 2010 Author Report Posted December 21, 2010 Thank you... after yet another Ambulance ride and hours in the ER, that is so reassuring to read! We spoke with her pediatrician while in the ER today and I asked him about running labs for her in advance - he's going to try to reach Dr. B for us tomorrow and see what he can do to help. He is the one who diagnosed her and he is truly wonderful, just not enough exp with PANDAS... by his own admission - but he will consult with any name I give him to try to help.
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