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cab40

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Posts posted by cab40

  1. Thrilled to report that our insurance appeal was successful and we're getting reimbursed for dd's IVIG! Was so excited to get the official word-- just had to share.

     

    I'd be happy to post about how I navigated the process, what I learned, the strategies I used, etc. if anyone would like me to. I am also planning to strip our personal info from my appeal letter so I can share the parts that contain language and information that might prove helpful to others.

     

    The more of us who succeed in getting coverage, the better for everyone.

     

    TH

  2. My ds14 is similar to your son in that he has IgG deficiencies to 10/14 s. pneumoniae serotypes. He has also developed IgA deficiency in the last year. We are doing HD IVIG (1.5g) every 8 weeks with Dr. B. It works well. He had a very bad exacerbation with his first IVIG about 8 months ago - I think this was because he was 13 years old and had PANDAS most of his life due to chronic, unrelenting sinusitis. Since the first IVIG, he has shown improvement with each IVIG. He has not had a single sinus infection since the first IVIG, so I know it is doing something to keep him healthy. Now that we are no longer dealing with tics and constant OCD, we are able to do cognitive behavioral therapy and nutritional interventions to help him develop good behaviors and keep him healthy.

     

    If I had anything to do over I would have started IVIG sooner.

     

    I do not know how long he will be receiving IVIG. I am going to do it for at least 1 year and then the we will decide if we can start cutting back.

     

    We are very fortunate because insurance has covered this. I had to change insurance plans - (which meant waiting 8 months for open enrollment) but it was worth it. We could not afford this otherwise.

  3. To be honest I forgot about this test. No never got it done. I never understood why Dr. T told us to get a test that was impossible to obtain. I tried every which way and even called Mayo Clinic in Rochester, MN. I basically had to be there to have the test done.

     

    I am sorry about your situation. I have been with my son abd daughter. Luckily, I switched gears from seeing only PANDAS dr's such as dr T and Dr. B and found 2 fantastic Lyme Literate dr's who really understand infections in general because my kids weren't only ailing from strep bacteria thus focusing purely in strep was not getting my kids well. We were in a cycle @ best where we had horrible weeks and then a few better ones. Finally exploring other bacteria, we got to the root of the problems and the kids are so much better. We finally felt we were getting somewhere and not stabbing @ things in the dark. Dr. T was VERY kind to us when he was REACHABLE but he really only got the pANDAS end of things and acted shocked when we figured things out and explained the other bacteria infections causing the autoimmune response. I could name dozens of other parent who had similar stories to mine and whose kids are now thriving and regaining their childhood's back b/c their parents finally said, I need to explore another angle/ method of treatment.

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