Live in Mass, insurance questions to see Dr. B, finally getting the ba

[lmkmip67]

well, I talked to my pediatrician today. She told me she is not likely able to get me a referral for Dr. B in Ct. because of my insurance (Harvard Pilgrim HMO) until I see someone locally that works in this area but says they can not treat him. So basically we are doing a few things to get the ball rolling. The is ordering the tests locally that I asked her to. Only one she has no clue about is fungal, but for now, that is ok. She is getting two strep tests done of some sort, one is more accurate, getting a lyme test and then something else, I forget what. But she spent 1/2 hour on the phone with me looking over a PANDAS write up and the suggested tests. So we will get those done this week, on Saturday. If the titters are high she said will start him on a 10 day round of antibiotics, augmentin. She is cautious about all of this, but is not ruling anything out. She did suggest I get the ball rolling to see other doctors too locally so that if that is it, we can start getting insurance to cover it if I do go to CT. So she will put in referrals for two other doctors, one a reumologist that says he deals with PANDAS and a neurology/psych person. So that is good. And she did say that she thinks it is totally valuable to call Dr. B's office and ask about what others have done, see how much a consult would cost out of pocket, etc. Especially if I have the blood work results to take with me, that might be a very viable first option for us down there while we see someone locally and get that dealt with. Then perhaps insurance would cover with a letter.

 

So I feel at least like we are starting the process. But I am worried about insurance and coverage. It may sound selfish, but I don't have thousands to do treatments and all of that. I am taking it one day at a time, and hoping we can figure it out. She didn't know anything about Dr. B, so I gave her his web site. She is just cautious about antibiotics long term, and I understand that. But I want to figure out what is going on with my son so I can help him. He is really struggling with tics (abotu 4 now) and OCD stuff like crazy. She is not ruling out PANDAS though, so I think as we work through this she will at least be on board and supportive. And that, of course, is important if we need to get referrals out of state and any treatment done locally.

 

Does anyone know anything about Harvard Pilgrim HMO and Massachusetts and treating this out of state?

[kmom]

I don't know about your specific ins. but I did see Dr. B. today and we have spent a lot so far out of pocket to get the ball rolling between visiting Children's Hospital Of Philly (PANDAS specialist dosn't accept ins.), Dr. T. who we're waiting see if we're reimbursed at all from paperwork submitted to ins. co. and just from bloodwork and Rx. I do know that Dr. T. in NJ mentions that you shouldn't be scared off by his $400 consult fee. He feels every child has right to be treated so he might work something out with you. We were charged $400 to see him. Back to Dr. B...we weren't sure if our ins. would cover office visit and allergy testing. His office visit is $300 and phone consult is $500. Much more worth it to visit his office. He was fantastic and less money than a phone consult. Turns out our PA Blue Cross was accepted. Felt like we won the lottery when only had to pay the co-pay! We had all our info--strep, mycoP and Lymes results. Oh and we had Dr. C's testing done and results with us. That help make things crystal clear for him. If you can get all that done ahead of time it should help. Plus, Dr. B's staff is awesome. Just tell them your situation and ask if they can help you in any way. You might be surprised. These docs and staff have a special spot for PANDAS kids/families. Best of luck!!!

[LNN]

Everyone I know in New England travels at least as south as CT. Including those who have tried "local" sources first. I will PM you.

[lmkmip67]

Thank you, LLM. I am not worried about paying $300. It is more the thousands other treatments could cost as I don't have it. I want to help my son and worry if I can't. So that is where my worry is. Thank you for the information. Someone is emailing me the list of tests Dr. B looks at so I am going to add those to what my pediatrician has already ordered. I can pay for an office visit, especially if I can go down with the blood work already. I am moving forward with an appointment here to see Dr. F. I know he is conservative and likes to see high titters. But it could be a critical piece for me if he can't treat DS, then my insurance will be more likely to cover the out of state Dr. for anything else we may need down there. And if not, worst case is I find an insurance that does and hopefully switch in Oct. when it is open enrollment at my DH's job.

[NancyD]

I have Harvard Pilgrim PPO. I just checked online and Bouboulis is listed under the PPO plan but not HMO. You need to contact a nurse care manager and explain that you need an IMMUNOLOGIST with expertise in PANDAS/PITANDS/SC and who is taking on new patients and can see your child within the next month (or whatever time frame Dr. B can see you). TePas is great to work with but she is no longer taking on any more PANDAS patients and I don't know any other immunologists in MA who have expertise with PANDAS. I have been able to obtain approval in the past to see doctors outside the network but at in-network rates. And I have found HPHC pretty decent to work with. Keep in mind though, HPHC stopped covering IVIg for PANDAS in Feb so you need to use another code.

 

Good luck finding a local doctor who knows PANDAS and is willing to see you soon. Fuhlbrigge (a rheumatologist) is booked out until November or December. Unless your child has high titers he won't diagnose PANDAS. Geller (psychiatrist) is not taking on any patients at MGH, but he is taking patients in his private practice. Initial diagnostic interview is $500 and then $1500 a few weeks later to meet with him. If you join his study they waive the $500 diagnostic interview, but not the $1500 fee.

 

I would definitely try to find a way to see Dr. B!

Nancy

Edited August 26, 2010 by NancyD

[lmkmip67]

I have Harvard Pilgrim PPO. I just checked online and Bouboulis is listed under the PPO plan but not HMO. You need to contact a nurse care manager and explain that you need an IMMUNOLOGIST with expertise in PANDAS/PITANDS/SC and who is taking on new patients and can see your child within the next month (or whatever time frame Dr. B can see you). TePas is great to work with but she is no longer taking on any more PANDAS patients and I don't know any other immunologists in MA who have expertise with PANDAS. I have been able to obtain approval in the past to see doctors outside the network but at in-network rates. And I have found HPHC pretty decent to work with. Keep in mind though, HPHC stopped covering IVIg for PANDAS in Feb so you need to use another code.

 

Good luck finding a local doctor who knows PANDAS and is willing to see you soon. Fuhlbrigge (a rheumatologist) is booked out until November or December. Unless your child has high titers he won't diagnose PANDAS. Geller (psychiatrist) is not taking on any patients at MGH, but he is taking patients in his private practice. Initial diagnostic interview is $500 and then $1500 a few weeks later to meet with him. If you join his study they waive the $500 diagnostic interview, but not the $1500 fee.

 

I would definitely try to find a way to see Dr. B!

Nancy

 

I have an appointment in 4 weeks with him. I will be calling Dr. Fuhlbrigge tomorrow. If he is really booked that far out, then perhaps I can really use that to my advantage for the insurance. I will be calling them and pushing for that. I appreciate the input!

[NancyD]

Another parent I know called his office a few weeks ago and it was November at the very earliest back then. So use that to your advantage.

 

I have Harvard Pilgrim PPO. I just checked online and Bouboulis is listed under the PPO plan but not HMO. You need to contact a nurse care manager and explain that you need an IMMUNOLOGIST with expertise in PANDAS/PITANDS/SC and who is taking on new patients and can see your child within the next month (or whatever time frame Dr. B can see you). TePas is great to work with but she is no longer taking on any more PANDAS patients and I don't know any other immunologists in MA who have expertise with PANDAS. I have been able to obtain approval in the past to see doctors outside the network but at in-network rates. And I have found HPHC pretty decent to work with. Keep in mind though, HPHC stopped covering IVIg for PANDAS in Feb so you need to use another code.

 

Good luck finding a local doctor who knows PANDAS and is willing to see you soon. Fuhlbrigge (a rheumatologist) is booked out until November or December. Unless your child has high titers he won't diagnose PANDAS. Geller (psychiatrist) is not taking on any patients at MGH, but he is taking patients in his private practice. Initial diagnostic interview is $500 and then $1500 a few weeks later to meet with him. If you join his study they waive the $500 diagnostic interview, but not the $1500 fee.

 

I would definitely try to find a way to see Dr. B!

Nancy

 

I have an appointment in 4 weeks with him. I will be calling Dr. Fuhlbrigge tomorrow. If he is really booked that far out, then perhaps I can really use that to my advantage for the insurance. I will be calling them and pushing for that. I appreciate the input!

[lmkmip67]

Nancy, I will for sure! It certainly can't hurt my case, anyway.