mom md Posted August 27, 2010 Report Share Posted August 27, 2010 BCBS of NC has paid for plasmaphoresis and two IVIG treatments. Believe me too when I say I know how lucky I am and how blessed we are to have come as far as we have. Now we are just trying to stay here. We are seeing a few symptoms 5 months out from our last treatment, though mild, and our doctors here want us to do IVIG again. His latest titers were still elevated so he is still making them but they are lower. Our neurologist here wants him to have it every 3-6 months and our immunologist says probably every 6 months. Got the letter yesterday saying BCBS denied IVIG because it was experimental for PANDAS. We have never used that code before so they must have seen it somewhere in his record. I e-mailed my immunologist and she is ready to go into battle next week for us. I know I have a good arsenal...NIH statement, Swedo's study, United Healthcare's IVIG list which states it is proven to work for PANDAS, a letter from all our doctors, actual proof that IVIG works for him and obviously no other good alternative, etc. Does anyone have anything else? I looked at what is required to get "experimental" things covered and I think I have enough but I just want to make sure. My immunologist also e-mailed me tonight and asked me to find ALL other diagnosis codes that have worked for people... I know autoimmune disesae nonspecific, post-infectious encephalitis, and chorea. Can anyone add to this list? Link to comment Share on other sites More sharing options...
mom md Posted August 27, 2010 Author Report Share Posted August 27, 2010 I also want to add my 6 year old son has been diagnosed and is mild now but may need IVIG down the road. To think of two children possibly needed 2-3 treatments a year each is overwhelming without insurance coverage. Link to comment Share on other sites More sharing options...
saidie10 Posted August 27, 2010 Report Share Posted August 27, 2010 autoimmune disease non specified is what works for us. i imagine others will be able to help!!! good luck and keep up the fight!!!! Link to comment Share on other sites More sharing options...
parents4eyes Posted August 27, 2010 Report Share Posted August 27, 2010 (edited) x Edited September 9, 2010 by parents4eyes Link to comment Share on other sites More sharing options...
thereishope Posted August 27, 2010 Report Share Posted August 27, 2010 Don't know if this thread would help at all http://www.latitudes.org/forums/index.php?showtopic=5073&st=0&p=35547&hl=encephalitis&fromsearch=1entry35547 Link to comment Share on other sites More sharing options...
nevergiveup Posted August 27, 2010 Report Share Posted August 27, 2010 What about his high ana, chorea more suggestive of autoimmune than pandas. Can u not go that angle, rather than trying to justify treatment off of pandas diagnosis? Also I thought the health insurance reform bill included research protocol for sick children, not effective till Sept 14th. If they keep denying, I would call a health care advocate and lawyer to help out, cuz they maybe able to give better direction. Health Insurance Reform is so needed. I also want to add my 6 year old son has been diagnosed and is mild now but may need IVIG down the road. To think of two children possibly needed 2-3 treatments a year each is overwhelming without insurance coverage. Link to comment Share on other sites More sharing options...
mom md Posted August 30, 2010 Author Report Share Posted August 30, 2010 What about his high ana, chorea more suggestive of autoimmune than pandas. Can u not go that angle, rather than trying to justify treatment off of pandas diagnosis? Also I thought the health insurance reform bill included research protocol for sick children, not effective till Sept 14th. If they keep denying, I would call a health care advocate and lawyer to help out, cuz they maybe able to give better direction. Health Insurance Reform is so needed. I also want to add my 6 year old son has been diagnosed and is mild now but may need IVIG down the road. To think of two children possibly needed 2-3 treatments a year each is overwhelming without insurance coverage. All good ideas...I tried to find the health care reform info on the internet to print out that too. Do you know where I would find it? Link to comment Share on other sites More sharing options...
mom md Posted August 30, 2010 Author Report Share Posted August 30, 2010 Possible codes 323.8 encephalitis 323.9 unspecified cause of encephalitis, myelitis, encephalomyelitis 323.41 encephalitis and encephalomyelitis due to infection 348.30 encephalopathy unspecified 392 rheumatic chorea 392.9 rhuematic chorea without mention of heart involvement 333.0 other exptrapyramidal disease and abnormal movement disorders/ includes: other forms of extrapyramidal basal ganglia, or striatopallidal disease 279.3 unspecified immunity deficiency 279.4 autoimmune disease not otherwise specified 279.9 unspecified disorder of immune mechanism Link to comment Share on other sites More sharing options...
melanie Posted August 30, 2010 Report Share Posted August 30, 2010 Procedure Codes and Billing Guidelines: To report provider services, use appropriate CPT** codes, Modifiers, Alpha Numeric (HCPCS level 2) codes, Revenue codes, and/or ICD-9-CM diagnostic codes HCPCS J1566 Injection, immune globulin, intravenous, lyophilized (e.g., powder), 500 mg HCPCS J1568 Injection, immune globulin, (Octogam), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1569 Injection, immune globulin, (Gammagard liquid), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1572 Injection, immune globulin, (Flebogamma), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1561 Injection, immune globulin, (Gamunex), intravenous, non-lyophilized, (e.g. liquid), 500 mg HCPCS J1562 Injection, immune globulin (Vivaglobin), 100 mg HCPCS J1459 Injection, immune globulin (Privigen), intravenous, nonlyophilized (e.g., liquid), 500 mg CPT 90283 Immune globulin (IgIV), human, for intravenous use CPT 90284 Immune globulin (SCIg), human, for use in subcutaneous infusions, 100 mg, each CPT 96369 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); initial, up to 1 hour, including pump set-up and establishment of subcutaneous infusion site(s) CPT 96370 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); each additional hour (List separately in addition to code for primary procedure) CPT 96371 Subcutaneous infusion for therapy or prophylaxis (specify substance or drug); additional pump set-up with establishment of new subcutaneous infusion site(s) (List separately in addition to code for primary procedure Link to comment Share on other sites More sharing options...
mom md Posted August 30, 2010 Author Report Share Posted August 30, 2010 Possible codes 323.8 encephalitis 323.9 unspecified cause of encephalitis, myelitis, encephalomyelitis 323.41 encephalitis and encephalomyelitis due to infection 348.30 encephalopathy unspecified 392 rheumatic chorea 392.9 rhuematic chorea without mention of heart involvement 333.0 other exptrapyramidal disease and abnormal movement disorders/ includes: other forms of extrapyramidal basal ganglia, or striatopallidal disease 279.3 unspecified immunity deficiency 279.4 autoimmune disease not otherwise specified 279.9 unspecified disorder of immune mechanism Link to comment Share on other sites More sharing options...
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