Please help: Getting insurance to cover IVIG for immunodeficiency...

[momto2pandas]

I am really hoping that someone can help me out here.

 

Just got back from the immunologist. Both kids' labs are consistent with immunodeficiency (one of them is actually total IgG deficient, not just IgG subclass 3 deficient as the other one is). They failed the strep pneumoniae titers, as I mentioned before. The immunologist said that, given that we have now finished round 9 of various different strong courses of antibiotics and their sinus infections remain, and given their lab results, they should be treated with IVIG....if the lab tests come out the same way on repeat. The issue is - he wants to re-vaccinate with Prevnar to "prove" that their immune systems are not making a response, prior to repeating the labs. He claims that without this proof, insurance will NOT cover their IVIG, no way, no how. I don't get this - they have already undergone a full vaccination schedule and obviously didn't have the required response - and are showing both by labs and clinically that they can't fight infections...so why do we need to vax again?

 

I refused the revax. They are doing decent with respect to PANDAS despite these infections (which, it turns out, have raised neither ASO nor mycoplasma - but they still have WAY high and messed up lymphocytes), and I don't want to rock the boat with Prevnar/Pneumovax. The immunologist repeat vaccinated me, and while it did appear bring up my immune tests, it was a neurololgical/mental health disaster that needed to be stopped with steroids. Not sure I'm willing to open that Pandora's box with the kids.

 

So where does this leave us? Others on this board must have dealt with this before.... did you just bite the bullet and revax, or can insurance companies be convinced not to make us go through this, given the comorbid PANDAS diagnosis and the fact that we have already vaccinated? I can't afford to be giving 2 kids perhaps monthly IVIG for who knows how long, without support from our insurance. And obviously, I can't afford to let these infections go on and on ... and to keep them waiting as sitting ducks for something worse than a sinus infection to hit.

 

To make matters worse, he wouldn't even continue their antibiotics, which had been helping a lot, though obviously not eliminating the infections entirely. The last course ended Tuesday, and ds6 is already ill again. This was ridiculous to me given that my child (his patient!) was obviously sick when I brought him in, and the immuno said that he could clearly see the green mucus up his nose. He said that he couldn't "just keep them on antibiotics for the rest of their lives." I called the pediatrician afterwards to complain and they called in Omnicef, which we haven't yet tried, saying that there was no way that we should just let a sinus infection rage untreated, particularly in an immunodeficient child.

[peglem]

Huh? I do not think the insurance company looks at lab reports! I don't know what insurance you have but I think UHC's policy(I can look it up again, if you want) is an immune deficiency w/ at least 1 infection attributable to it. IGg deficiency w/ a chronic infection sounds to me like it would qualify.

[nevergiveup]

Ok your immune doc is playing games. If your kids had a good titers respo against H Influenzae vaccine they will more than likely have a short term response against another prevnar. (Voiding all chance of getting ins to pay for anything) If they already had the vaccine with no response this should be good enough. Insurance only requires a low igg with low subclass also to prove CVID. However your child with higher IGG, then you need the selective antibody deficiency justification to prove a deficiency. But already had a vaccine this is overkill. So if your willing to travel pm me and I will refer you to a great immune doc specializes in b cell issues (low igg subclass 3 is an indication of b cell issues). Also if you had the cunningham tests done, the autoantibodies will help with immune def justification. He works with a shrink who prescribes high dose abx and will ensure your kids immune systems are reviewed by the immune doc. Your immune doc is just behind on the science, old school, or not up on the latest research. Again with ocd, tics, immune defs and autoantibodies this should not be an issue for ins, just don't call it PANDAS, rather autoimmune disease with immune deficiency.Clearly this person probably isn't the right doc, they would have only treated the immune def not the autoantibodies which requires different ivig dosages. The only problem with these docs I am suggesting is that they have a very long waiting list treating kids with serious life threatening autoimmune disease so its hard to get an appt.

 

name='momto2pandas' date='Mar 12 2010, 09:04 PM' post='59731']

I am really hoping that someone can help me out here.

 

Just got back from the immunologist. Both kids' labs are consistent with immunodeficiency (one of them is actually total IgG deficient, not just IgG subclass 3 deficient as the other one is). They failed the strep pneumoniae titers, as I mentioned before. The immunologist said that, given that we have now finished round 9 of various different strong courses of antibiotics and their sinus infections remain, and given their lab results, they should be treated with IVIG....if the lab tests come out the same way on repeat. The issue is - he wants to re-vaccinate with Prevnar to "prove" that their immune systems are not making a response, prior to repeating the labs. He claims that without this proof, insurance will NOT cover their IVIG, no way, no how. I don't get this - they have already undergone a full vaccination schedule and obviously didn't have the required response - and are showing both by labs and clinically that they can't fight infections...so why do we need to vax again?

 

I refused the revax. They are doing decent with respect to PANDAS despite these infections (which, it turns out, have raised neither ASO nor mycoplasma - but they still have WAY high and messed up lymphocytes), and I don't want to rock the boat with Prevnar/Pneumovax. The immunologist repeat vaccinated me, and while it did appear bring up my immune tests, it was a neurololgical/mental health disaster that needed to be stopped with steroids. Not sure I'm willing to open that Pandora's box with the kids.

 

So where does this leave us? Others on this board must have dealt with this before.... did you just bite the bullet and revax, or can insurance companies be convinced not to make us go through this, given the comorbid PANDAS diagnosis and the fact that we have already vaccinated? I can't afford to be giving 2 kids perhaps monthly IVIG for who knows how long, without support from our insurance. And obviously, I can't afford to let these infections go on and on ... and to keep them waiting as sitting ducks for something worse than a sinus infection to hit.

 

To make matters worse, he wouldn't even continue their antibiotics, which had been helping a lot, though obviously not eliminating the infections entirely. The last course ended Tuesday, and ds6 is already ill again. This was ridiculous to me given that my child (his patient!) was obviously sick when I brought him in, and the immuno said that he could clearly see the green mucus up his nose. He said that he couldn't "just keep them on antibiotics for the rest of their lives." I called the pediatrician afterwards to complain and they called in Omnicef, which we haven't yet tried, saying that there was no way that we should just let a sinus infection rage untreated, particularly in an immunodeficient child.

[sf_mom]

As you know, our twins have low IgG 3s, low total serum, low IgG 1 & 3, low total serum (525 total, 300 something for the other). They also wanted to revaccinate and we are declining 'ALL' vaccinations until we can resolve ALL underlying immune issues. I will not take the chance of the cross reactive antibodies rising and crossing BBB making matter worse. Remember we have CaM Kinase results on them too.

 

Our insurance covered the IVIG treatments with Dr. K once we met deduct and co-pay. I'm not sure your children would require monthly IVIG and sometimes the lower dose 'with auto-immune' just stirs things up. Something to consider.... high dose IVIG, one time treatment and see how they do. You might be surprised and see all the IgG issues resolve.

 

-Wendy

 

I am really hoping that someone can help me out here.

 

Just got back from the immunologist. Both kids' labs are consistent with immunodeficiency (one of them is actually total IgG deficient, not just IgG subclass 3 deficient as the other one is). They failed the strep pneumoniae titers, as I mentioned before. The immunologist said that, given that we have now finished round 9 of various different strong courses of antibiotics and their sinus infections remain, and given their lab results, they should be treated with IVIG....if the lab tests come out the same way on repeat. The issue is - he wants to re-vaccinate with Prevnar to "prove" that their immune systems are not making a response, prior to repeating the labs. He claims that without this proof, insurance will NOT cover their IVIG, no way, no how. I don't get this - they have already undergone a full vaccination schedule and obviously didn't have the required response - and are showing both by labs and clinically that they can't fight infections...so why do we need to vax again?

 

I refused the revax. They are doing decent with respect to PANDAS despite these infections (which, it turns out, have raised neither ASO nor mycoplasma - but they still have WAY high and messed up lymphocytes), and I don't want to rock the boat with Prevnar/Pneumovax. The immunologist repeat vaccinated me, and while it did appear bring up my immune tests, it was a neurololgical/mental health disaster that needed to be stopped with steroids. Not sure I'm willing to open that Pandora's box with the kids.

 

So where does this leave us? Others on this board must have dealt with this before.... did you just bite the bullet and revax, or can insurance companies be convinced not to make us go through this, given the comorbid PANDAS diagnosis and the fact that we have already vaccinated? I can't afford to be giving 2 kids perhaps monthly IVIG for who knows how long, without support from our insurance. And obviously, I can't afford to let these infections go on and on ... and to keep them waiting as sitting ducks for something worse than a sinus infection to hit.

 

To make matters worse, he wouldn't even continue their antibiotics, which had been helping a lot, though obviously not eliminating the infections entirely. The last course ended Tuesday, and ds6 is already ill again. This was ridiculous to me given that my child (his patient!) was obviously sick when I brought him in, and the immuno said that he could clearly see the green mucus up his nose. He said that he couldn't "just keep them on antibiotics for the rest of their lives." I called the pediatrician afterwards to complain and they called in Omnicef, which we haven't yet tried, saying that there was no way that we should just let a sinus infection rage untreated, particularly in an immunodeficient child.

[faith]

re the insurance, .. what if there are no deficiencies?

 

would anyone know what a HIGH igg subclass suggests? (subclass 4)....

[momto2pandas]

Thanks, are these the same folks you pm'ed me about before? I am willing to travel if it results in something... obviously if they need ongoing care, we would try to find a situation that didn't require our traveling cross-country on a frequent basis. Would also hate to travel just to hear the same thing or to have a repeat test that suddently showed that things inched over the border to normal for some random reason.

 

We haven't done Cunningham since we've never felt so far that we needed verification of the diagnosis. Does insurance look at that? If the test contributes something other than "this is PANDAS" then we could get it, if the lab is back to doing it.

 

I did look at our insurance guidelines (and a couple of others just to see) and there is indeed something in there about needing to revaccinate to "verify" that the immune system doesn't work. Probably just their way of avoiding paying. I just thought that perhaps someone would have experience with insurance companies listening to reason when the vax is contraindicated and when the clinical picture is pretty clear.

 

 

Ok your immune doc is playing games. If your kids had a good titers respo against H Influenzae vaccine they will more than likely have a short term response against another prevnar. (Voiding all chance of getting ins to pay for anything) If they already had the vaccine with no response this should be good enough. Insurance only requires a low igg with low subclass also to prove CVID. However your child with higher IGG, then you need the selective antibody deficiency justification to prove a deficiency. But already had a vaccine this is overkill. So if your willing to travel pm me and I will refer you to a great immune doc specializes in b cell issues (low igg subclass 3 is an indication of b cell issues). Also if you had the cunningham tests done, the autoantibodies will help with immune def justification. He works with a shrink who prescribes high dose abx and will ensure your kids immune systems are reviewed by the immune doc. Your immune doc is just behind on the science, old school, or not up on the latest research. Again with ocd, tics, immune defs and autoantibodies this should not be an issue for ins, just don't call it PANDAS, rather autoimmune disease with immune deficiency.Clearly this person probably isn't the right doc, they would have only treated the immune def not the autoantibodies which requires different ivig dosages. The only problem with these docs I am suggesting is that they have a very long waiting list treating kids with serious life threatening autoimmune disease so its hard to get an appt.

 

name='momto2pandas' date='Mar 12 2010, 09:04 PM' post='59731']

I am really hoping that someone can help me out here.

 

Just got back from the immunologist. Both kids' labs are consistent with immunodeficiency (one of them is actually total IgG deficient, not just IgG subclass 3 deficient as the other one is). They failed the strep pneumoniae titers, as I mentioned before. The immunologist said that, given that we have now finished round 9 of various different strong courses of antibiotics and their sinus infections remain, and given their lab results, they should be treated with IVIG....if the lab tests come out the same way on repeat. The issue is - he wants to re-vaccinate with Prevnar to "prove" that their immune systems are not making a response, prior to repeating the labs. He claims that without this proof, insurance will NOT cover their IVIG, no way, no how. I don't get this - they have already undergone a full vaccination schedule and obviously didn't have the required response - and are showing both by labs and clinically that they can't fight infections...so why do we need to vax again?

 

I refused the revax. They are doing decent with respect to PANDAS despite these infections (which, it turns out, have raised neither ASO nor mycoplasma - but they still have WAY high and messed up lymphocytes), and I don't want to rock the boat with Prevnar/Pneumovax. The immunologist repeat vaccinated me, and while it did appear bring up my immune tests, it was a neurololgical/mental health disaster that needed to be stopped with steroids. Not sure I'm willing to open that Pandora's box with the kids.

 

So where does this leave us? Others on this board must have dealt with this before.... did you just bite the bullet and revax, or can insurance companies be convinced not to make us go through this, given the comorbid PANDAS diagnosis and the fact that we have already vaccinated? I can't afford to be giving 2 kids perhaps monthly IVIG for who knows how long, without support from our insurance. And obviously, I can't afford to let these infections go on and on ... and to keep them waiting as sitting ducks for something worse than a sinus infection to hit.

 

To make matters worse, he wouldn't even continue their antibiotics, which had been helping a lot, though obviously not eliminating the infections entirely. The last course ended Tuesday, and ds6 is already ill again. This was ridiculous to me given that my child (his patient!) was obviously sick when I brought him in, and the immuno said that he could clearly see the green mucus up his nose. He said that he couldn't "just keep them on antibiotics for the rest of their lives." I called the pediatrician afterwards to complain and they called in Omnicef, which we haven't yet tried, saying that there was no way that we should just let a sinus infection rage untreated, particularly in an immunodeficient child.

[momto2pandas]

I think that without deficiencies, if you want IVIG you have to argue it on the basis of PANDAS or another condition, which as I understand it is an uphill battle. Our insurance specifically excludes covering PANDAS, as do the other policies I looked at. We weren't yet at the point of thinking of doing it for PANDAS in any case, but if we were, we would definitely be thinking cash pay. We could swallow that for one or a few tx but if immundeficiency means they will need it over and over long-term..... gotta try to avoid swallowing that.

 

No idea what high IgG means!

 

 

re the insurance, .. what if there are no deficiencies?

 

would anyone know what a HIGH igg subclass suggests? (subclass 4)....