So Discouraged & at a loss of what to do.......

[Dedee]

So once again our insurance denied our appeal for IVIG. What was so heartbreaking was to read their letter of explanation. Evidently ignorance abounds everywhere. My daughter is positive for mycoplasma pneumonia both IgG and IgM and of course all of that documentation was sent to insurance. Even still, the letter states "The presence of antibodies is not indicative of her having any acute medical condition related to the Mycoplasma pneumonia. In fact, and with the exception of the behavioral changes, there is no evidence in this individual that she had any acute medical disorder." So evidently, you can wake up one morning a completely different person with debilitating OCD and seperation anxiety but it isn't considered an "acute medical disorder." I guess if your kidneys shut down over night that might count as an acute medical condition, but hey this is just a child's brain we are talking about. I can hardly breath I am so upset. Of course they go on to say that she doesn't have PANDAS because it didn't follow a documented strep infection so rule that out. So basically, there is nothing physically wrong with her, she is just crazy. I could scream.........

 

I am lost as to what to do now. We could appeal again, but with them refusing to acknowledge any physical issue, I can't see any difference in outcome. I think one issue for us is that she doesn't have any antibody deficiency. So I guess we are looking at out of pocket. We have seen a nurse practicioner in the past who treats PANDAS patients and does IVIG in her office. We had to quit seeing her because she is cash only and we needed to use insurance as much as possible. I'm thinking of getting another appointment and check out the possibility of doing IVIG through her. It may be the best route if we have to do the out of pocket route. Those of you who have done it this way, do you have any suggestions?

 

I just can't give up on helping my daughter. I have to at least try to find a way to make this possible. I am so devestated....

[dcmom]

Dedee-

 

A couple of things:

 

First- I think you said your insurance would pay for pex. Could you consider seeing Dr Latimer? It would cost you- for sure- but you could calculate, and choose your least costly option.

 

Second- I know someone who found that their prescription plan would cover the cost of the IG- they would just have to pay the doctors' fee out of pocket. Could you check into that possibility?

 

Thinking of you- don't give up!

 

Eileen

[Dedee]

Yes our insurance will pay for PEX for PANDAS. Problem is that the insurance letter is refusing to acknowledge that she has any medical disorder which disqualifies her for any treatment at all. They didn't accept a PANDAS diagnosis evidently (according to the letter today)because she wasn't positive for strep immediately following the exacerbation only for Myco P. But then went on to say there wasn't a direct coorelation of Myco P to her behavior. It is the most frustrating situation. They only acknowledge that she has behavior disorder. I will definately check on getting the IG through prescription plan though. That is a good idea. Thanks for the help.

 

Dedee

[kimballot]

Yes our insurance will pay for PEX for PANDAS. Problem is that the insurance letter is refusing to acknowledge that she has any medical disorder which disqualifies her for any treatment at all. They didn't accept a PANDAS diagnosis evidently (according to the letter today)because she wasn't positive for strep immediately following the exacerbation only for Myco P. But then went on to say there wasn't a direct coorelation of Myco P to her behavior. It is the most frustrating situation. They only acknowledge that she has behavior disorder. I will definately check on getting the IG through prescription plan though. That is a good idea. Thanks for the help.

 

Dedee

 

 

Dee Dee - I can only imagine how frustrating this is for you. I am assuming you are working with a PANDAS doc- correct?

 

How does your insurance company diagnose PANDAS (since there is no official diagnosis for PANDAS). The Canadian Government requires the clinical diagnosis be made by an expert in PANDAS. (see http://www.bloodmed.com/contentimage/guidelines/2854.pdf). That is about the closest thing I have seen to a PANDAS diagnosis definition.

 

Could you send the insurance company articles stating that a PANDAS exacerbation can be triggered by Mycoplamsa and that a large percentage of children DO NOT have elevated strep titers (such as this one: http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf or this one: http://jcn.sagepub.com/content/23/3/338.abstract or this one http://www.ncbi.nlm.nih.gov/pubmed/15301831)....

[eljomom]

Deedee---I am so sorry and can imagine the frustration you are feeling. Wish I could offer some help, but bottom line here is that until they change the stinkin' name to PANS, many of our kids are not going to get help.

[MMC]

We experienced the same denial with BCBS of NC, and our DS is even immune deficient. He has a diagnosis of Hypogammaglobulinemia from an immunologist based on blood test. They still would not approve IVIG, said there was not enough proof he needed it, etc. We did have PEX b/c they approved that. We did actually get one HD IVIG done after PEX...long story on how that got paid for.

[Dedee]

Wow, isn't it crazy that they would pay for PEX and not IVIG? We have decided to move ahead with the IVIG and pay out of pocket. We are doing it in a Doctor's office. They do IVIG frequently in the office. We are still going to work on another appeal but I can't wait any longer. My daughter needs help now. She will most likely need this again at some point in the future, so we hope we can get it approved before then. I am still waiting to hear confirmation, but they gave me a tentative of Monday as a start day. We are nervous but ready. Keeping my fingers crossed......

[tpotter]

Wow, isn't it crazy that they would pay for PEX and not IVIG? We have decided to move ahead with the IVIG and pay out of pocket. We are doing it in a Doctor's office. They do IVIG frequently in the office. We are still going to work on another appeal but I can't wait any longer. My daughter needs help now. She will most likely need this again at some point in the future, so we hope we can get it approved before then. I am still waiting to hear confirmation, but they gave me a tentative of Monday as a start day. We are nervous but ready. Keeping my fingers crossed......

 

I'm really happy for you. I would definitely go through the next appeal, and would suggest you address every issue they brought up...step by step, and make sure you have a doctor (PANDAS specialist is important like KimBallot said) able to confirm your information. If you're denied again, you can ask for an independent review by medical professional outside the insurance company.

 

I don't know how many of you are aware that these appeals are done by people who are 1) not necessarily pediatricians 2) not necessarily specialists in their fields 3) worst yet...not necesssarily even medical professionals. Case in point...I found out that our appeal last year was determined by a surgeon, psychiatrist (adult), and the director of business services (non-medical.) Pretty disgusting...huh?

 

I'm very glad you decided to go the private route and then fight it. Your child deserves a chance to get better, and not have it drag on.

[heidischuster]

I thought that mycoplasma pneumonia is a descendant of strep