FallingApart Posted July 30, 2009 Report Share Posted July 30, 2009 Hello, Our ped is very supportive and open to doing IVIG for DD for PANDAS. The problem is our Children's hospital doesn't believe in PANDAS and won't allow IVIG to be done for "only a case of PANDAS". Our ped is working in conjunction with Dr. K, but he apparently is on vacation this week. We are hoping to do the IVIG ASAP and would rather not wait the 10 more days until Dr. K returns from vacation to find out how we can get a hospital to take us. Has anyone with "only PANDAS" (meaning no other "recognized" autoimmune disorders) sucessfully done Dr. K's protocol of IVIG at a Children's hospital? If so, can I speak with you about this? I need to know the logistics on how to make this happen. My ped is working on speaking with other docs on this, but I said I would ask you all to see if one of us could save some time in getting an answer on this. If you have a recognized autoimmune disorder, our Children's hospital will give you IVIG tonight. But since PANDAS is not on that list, we can't get the physicians there to write off on the procedure. Thanks so much! Link to comment Share on other sites More sharing options...
Guest asaxon Posted July 30, 2009 Report Share Posted July 30, 2009 Hello, Our ped is very supportive and open to doing IVIG for DD for PANDAS. The problem is our Children's hospital doesn't believe in PANDAS and won't allow IVIG to be done for "only a case of PANDAS". Our ped is working in conjunction with Dr. K, but he apparently is on vacation this week. We are hoping to do the IVIG ASAP and would rather not wait the 10 more days until Dr. K returns from vacation to find out how we can get a hospital to take us. Has anyone with "only PANDAS" (meaning no other "recognized" autoimmune disorders) sucessfully done Dr. K's protocol of IVIG at a Children's hospital? If so, can I speak with you about this? I need to know the logistics on how to make this happen. My ped is working on speaking with other docs on this, but I said I would ask you all to see if one of us could save some time in getting an answer on this. If you have a recognized autoimmune disorder, our Children's hospital will give you IVIG tonight. But since PANDAS is not on that list, we can't get the physicians there to write off on the procedure. Thanks so much! I assume that you ped has an affiliation with a nearby hospital, so can't he just order IVIG there? Link to comment Share on other sites More sharing options...
FallingApart Posted July 30, 2009 Author Report Share Posted July 30, 2009 Yes, she is affiliated with our Children's hospital. But, she can't order the IVIG and get it approved because our children's doesn't believe in PANDAS. This is what she has been told. Are we missing something? Link to comment Share on other sites More sharing options...
Guest asaxon Posted July 30, 2009 Report Share Posted July 30, 2009 Yes, she is affiliated with our Children's hospital. But, she can't order the IVIG and get it approved because our children's doesn't believe in PANDAS. This is what she has been told. Are we missing something? I thought that hospital privileges included being able to use the hospital facility and support staff to conduct a procedure. Link to comment Share on other sites More sharing options...
michele Posted July 30, 2009 Report Share Posted July 30, 2009 Here is a website that is supposed to help get the IVIG approved. http://www.cidpusa.org/PANDAS.htm It recognizes PANDAS as autoimmune and so does the autoimmune society. http://www.aarda.org/research_display.php?ID=47 It would make no sense a hospital would deny treatment to a recognized autoimmune disorder. Could your Dr. just be using this as an excuse? I know my ped was too afraid to do the procedure. Go to Dr. Latimer or Dr. K they will get it done for you. Good luck. Yes, she is affiliated with our Children's hospital. But, she can't order the IVIG and get it approved because our children's doesn't believe in PANDAS. This is what she has been told. Are we missing something? I thought that hospital privileges included being able to use the hospital facility and support staff to conduct a procedure. Link to comment Share on other sites More sharing options...
ShaesMom Posted July 30, 2009 Report Share Posted July 30, 2009 K- Shae had her's done at the local hosiptal in the Ped's ward. We were able to scheduled ASAP. Also, our local hospital has an Infusion Room where things like IVIG are routinely done. We live in a town of 250,000 - small compared to where you are at. Can your Ped not send you to the regular hospital?? What about an allergy, asthma & Immunology office? Call around and ask if they do IVIG in their offices. If so, ask if one them would be willing to work with your Ped to give you the IVIG. You just keep running into one obstacle after another don't you. Link to comment Share on other sites More sharing options...
FallingApart Posted July 30, 2009 Author Report Share Posted July 30, 2009 I told our ped about Shae and that is why I posted this question. She said if we had PID or another "recognized" disorder we could get IVIG immediately. That is the roadblock we are running into. Link to comment Share on other sites More sharing options...
NancyD Posted July 30, 2009 Report Share Posted July 30, 2009 We got IVIG immediately at Children's Hospital Boston under Robert Fuhlbrigge, MD, pediatric rheumatologist. I, too, was originally told by other departments that Children's Hospital Boston "did not believe in PANDAS" so I was delighted to see that their immunology/rheumatology departments were fully supportive. You are welcome to contact me for more info if it helps. I know they are different Children's Hospitals. Nancy I told our ped about Shae and that is why I posted this question. She said if we had PID or another "recognized" disorder we could get IVIG immediately. That is the roadblock we are running into. Link to comment Share on other sites More sharing options...
Kayanne Posted July 30, 2009 Report Share Posted July 30, 2009 Could you suggest that your Dr. diagnose something else...like "autoimmune encephalitis"...because technically that is what this is... Link to comment Share on other sites More sharing options...
thereishope Posted July 30, 2009 Report Share Posted July 30, 2009 I think trying to have PANDAS fall under another umbrella of diagnosis would be your best bet as someone else suggested. It would help w/ insurance as well. That actually MIGHT be a reason why the hospital won't do it. They know they won't get paid by insurance because insurance won't recognize the diagnosis. Unfortunately, hospitals are often like that. Doctors often have priviledges at more than one hospital. He hasn't mentioned that as a possibility? You might end up needing a specialist directly associated w/ the hospital. They have more weight w/in the hospital itself than just a pediatrician. Link to comment Share on other sites More sharing options...
EAMom Posted July 30, 2009 Report Share Posted July 30, 2009 Kayanne is so correct...with some docs (and insurance companies) you are better off staying away from the "PANDAS" label. Calling it something else may help (ha ha... "PANDAS doesn't exist" anyway!") . Using words like "Unspecified Immune deficiency" and "autoimmune encephalitis" might carry more weight and get you beyond that PANDAS stigma. Link to comment Share on other sites More sharing options...
pandas2boys Posted August 7, 2009 Report Share Posted August 7, 2009 Here is a website that is supposed to help get the IVIG approved. http://www.cidpusa.org/PANDAS.htm It recognizes PANDAS as autoimmune and so does the autoimmune society. http://www.aarda.org/research_display.php?ID=47 It would make no sense a hospital would deny treatment to a recognized autoimmune disorder. Could your Dr. just be using this as an excuse? I know my ped was too afraid to do the procedure. Go to Dr. Latimer or Dr. K they will get it done for you. Good luck. On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done." Does anyone know what they do to help? Link to comment Share on other sites More sharing options...
thereishope Posted August 7, 2009 Report Share Posted August 7, 2009 Is that the website that says that PANDAS is an autism problem and makes it sound like IVIG will cure PANDAS? Here is a website that is supposed to help get the IVIG approved. http://www.cidpusa.org/PANDAS.htm It recognizes PANDAS as autoimmune and so does the autoimmune society. http://www.aarda.org/research_display.php?ID=47 It would make no sense a hospital would deny treatment to a recognized autoimmune disorder. Could your Dr. just be using this as an excuse? I know my ped was too afraid to do the procedure. Go to Dr. Latimer or Dr. K they will get it done for you. Good luck. On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done." Does anyone know what they do to help? Link to comment Share on other sites More sharing options...
Guest asaxon Posted August 7, 2009 Report Share Posted August 7, 2009 Is that the website that says that PANDAS is an autism problem and makes it sound like IVIG will cure PANDAS? On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done." Does anyone know what they do to help? Beware of snake oil salesmen. Link to comment Share on other sites More sharing options...
thereishope Posted August 7, 2009 Report Share Posted August 7, 2009 I actually wrote them awhile back asking them to correct their information. Needless to say, they never responded. I don't think they cite that their q and a on PANDAS is directly from the NIMH website either. Copyright infringement. Is that the website that says that PANDAS is an autism problem and makes it sound like IVIG will cure PANDAS? On the cidpusa website on the pandas page, they write "If you need help in getting IVIG approved CIDPUSA will help at a cost of $50. It is not easy but it can be done." Does anyone know what they do to help? Beware of snake oil salesmen. Link to comment Share on other sites More sharing options...
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