eljay1 Posted January 4, 2011 Report Share Posted January 4, 2011 After about a year of working with DAN docs and other specialists, we are making a trip to visit Dr. B. My son has major food allergies and has had all of the pandas symptoms for the last year, as well. (The allergies have gotten progressively worse.) For those of you who have seen him, do you have any advice for our appt.? Thanks! Link to comment Share on other sites More sharing options...
laure Posted January 4, 2011 Report Share Posted January 4, 2011 If you suspect PANDAS, he will send a prescription for blood work to have done before your appointment. It was very helpful to have all those results (or rather they were sent directly to him) before our first appointment. Also IGENEX testing, which he typically recommends. In our case, we didn't do the igenex right away, because her initial western blot was negative. After 2 months and a major exacerbation when he added Augmentin to the zith mix, we finally got those too, and she was positive for lyme. Talk to his receptionist, she can order all of those for you. He is amazing - we are only 4 hours away, but I would drive 4 days if I had to. Good luck! Link to comment Share on other sites More sharing options...
eljay1 Posted January 4, 2011 Author Report Share Posted January 4, 2011 I wondered if I would need to have the labs done ahead of time (I asked the receptionist), and she said no. I have a ton of results to bring with me that my son has had within the last month, but I asked her if she would be sending me anything and she said no. I really want to be as prepared as possible, because we live in OH and won't make it back for awhile!! Should I call back and ask again? Link to comment Share on other sites More sharing options...
kferricks Posted January 4, 2011 Report Share Posted January 4, 2011 I saw Dr.B for the first time last month. He did'nt send me an actual script to get the tests but a list to give to my doctor to order. My doctor would'nt order them so Dr.B said not to worry that after he saw us he would order them and he did. We also have another appt next week. When we got her blood work done, I signed and had a copy sent to me and him. He was very nice and walked us through everything. Believe me, I had nothing to take with me except a journal with dates. Link to comment Share on other sites More sharing options...
laure Posted January 4, 2011 Report Share Posted January 4, 2011 Maybe because we already had high titers in our anti dNase B blood work, he knew it was PANDAS and that is why we got the script prior to our visit. That was this past September. Or perhaps he has changed procedures? I know others have had the bloodwork done prior to their first visit as well. If I were coming from Ohio, that would be my preference. You could always ask again... Link to comment Share on other sites More sharing options...
JAG10 Posted January 4, 2011 Report Share Posted January 4, 2011 I got the list of labs ahead of time because someone (HealingtheDude, maybe) gave me the heads-up to do so. I had to call back and specifically ask for it, they don't automatically send it to you. It is written like a lab slip and a letter in hopes that your pediatrician will order them for you ahead of time, but also says if not, they will take care of it at your visit. My ped did it, I made dh deal with her, but honestly she was a little reluctant and admitted she didn't know what many of the tests even were (there are like 23 different tests.) Gratefully, the ped sent me the print out of the referral bcs 7 of the 23 were the wrong tests (she is not incompetent, many of these tests are only slightly different, but after being on this board and studying this stuff for a year, you get the differences-I actually went online and looked up the code numbers on Quest.) So, I called the ped back and she changed the wrong ones so we had the complete set. EVEN going with all of that done, we still had to get more tests completed to help build our case for insurance approval. Dr. B's office really know what they are doing with regards to getting insurance to approve IVIG, because we just got the word yesterday dd11 was approved for 6 months!!! Huge, HUGE relief since we paid out of pocket (with same insurance) to Dr. K just this past May. Praise God, she goes Feb 2-3!!! (FYI, our appt w/him was 11/29 to give you an idea of turn around time) Hopefully you can plead with your pediatrician to order since you are traveling such a distance (that helped convince ours.) He does also list Dr. Cunningham's test and IgeneX, those can both take awhile, but don't worry if you don't have those for the appt. Good luck and a thank you to all who have helped me too! Jill Link to comment Share on other sites More sharing options...
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