christinez100 Posted July 29, 2013 Report Share Posted July 29, 2013 We were denied IVIG for my 7yo daughter who has been diagnosed with PANDAS by Dr. K in Chicago. This was our first appeal and my second one goes directly to my husbands company. We have Aetna insurance, but the appeal had to go through a company that is part of MEDCO (the prescription company). I used an amazing letter a parent wrote on here as the basis and added the new study from NIMH and upadated info. I am guessing that this letter will be the best bet for this appeal as well. Here is my concern, we feel it is important to get my daughter in soon, since school will be starting and I do not want to put her in without having this done. After 18 months, it seems like the break between episodes is smaller and the anger and danger towards her sister duruing episodes are increasing. I have heard that Dr. K doesn't refer out of his state and we are in Michigan... I may have a chance to get some help through our local hospital and stay close to me home, does anyone know any Dr's in Michigan? I looked up the one doctor from PANDAS network and his HealthGrade scores are not good at all! I am not sure what to do, if my second appeal goes through I will gladly go to Chicago, but I fear it is much more expensive (even without the travel). Anyone else have this situation and ideas of things to do? Looking for some problem solving ideas... Thanks for your help... Link to comment Share on other sites More sharing options...
Chemar Posted July 29, 2013 Report Share Posted July 29, 2013 Hi I moved your thread direct to the PANDAS forum, as more members who can answer are here than on the New Member Forum. christinez100 1 Link to comment Share on other sites More sharing options...
Hopeny Posted July 29, 2013 Report Share Posted July 29, 2013 Hi sorry I can't offer you help in regards to ivig but you mentioned anger, I am wondering if you have evaluated for bartonella which can cause rage? Good luck with ivig, is there a health advocate you could use to help you? Link to comment Share on other sites More sharing options...
nicklemama Posted July 29, 2013 Report Share Posted July 29, 2013 We have a Michigan PANDAS forum on Yahoo. GreatLakesPANDAS. Come request membership. I will tell you upfront there are very few resources in Michigan. My son is Dr Ks patient too. christinez100 1 Link to comment Share on other sites More sharing options...
T_Anna Posted July 29, 2013 Report Share Posted July 29, 2013 (edited) We had IVIG twice at home through Walgreens infusion. Unfortunately, we were denied both times ($10,738 for 2g/2 day each time). According to Walgreens, who filed the paperwork both times, it helps to have a different diagnoses then PANDAS. Also, the more letters and documentation to show that your child has had strep and other illnesses the better. Our pediatrician was not helpful with anything. He was resistant to even talk to Walgreens, let alone Oxford. I had to press to get him to send reports about our frequent visits and blood tests (and I'm pretty sure he sent only the very minimum) : ( That said, if you need to pay out if pocket, or have the procedure at home, I strongly recommend Walgreens. They were very professional and really tried to help with the insurance. T.Anna DS15 Edited July 29, 2013 by T.Anna christinez100 1 Link to comment Share on other sites More sharing options...
christinez100 Posted July 29, 2013 Author Report Share Posted July 29, 2013 Hi sorry I can't offer you help in regards to ivig but you mentioned anger, I am wondering if you have evaluated for bartonella which can cause rage? Good luck with ivig, is there a health advocate you could use to help you? Thank you for the thought... I looked up the symptoms and they do not match. I will look in to a health advocate. Link to comment Share on other sites More sharing options...
christinez100 Posted November 4, 2013 Author Report Share Posted November 4, 2013 Update: Sorry to wait so long... but you all understand I am sure! I received my final denial from Aetna UPS basically stating that PANDAS does not have a diagnosis code in the ICD-9 or ICD-10 or the DSM-5 - so they were basically saying it didn't exist. My husbands company is switching to Teamsters insurance in January and will be out of the "insurance business" then, so... they don't care. Luckily I received my denial during my open enrollment with my school employer and when I asked about IVIG for PANDAS they stated it is "standard procedure" for that diagnosis. What??? I had to ask 3 times and apologized afterward. So after making the decision of taking an $800/month paycut (money I received for not taking my insurance and the cost of our insurance) I took the insurance and we are approved for IVIG treatment and going this week. I now understand the statement "wept with joy". I will not stop educating as many health care professionals as I know about this subject! It is so important, and as we wait for the research from the NIMH study to come out I can say, let's hope this becomes standard. Thanks Link to comment Share on other sites More sharing options...
T_Anna Posted November 4, 2013 Report Share Posted November 4, 2013 Just curious, which health insurance is that? T.Anna Link to comment Share on other sites More sharing options...
SB32313 Posted December 2, 2013 Report Share Posted December 2, 2013 Can anyone tell me how the IVIG was coded if it was approved by your insurance? And what insurance company it was? Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now