AmbersMommy Posted July 29, 2014 Report Share Posted July 29, 2014 My daughter had her first episode with PANDAS in 2010. We were lucky and had IVIG. However, the insurance company stopped paying, and we stopped the treatment. Fast-forward to this year. We have a new insurance company and they are paying for the IVIG. We have had 7 treatments. Usually she would have a reaction that would include near-rage to just irritability. This time...NOTHING. From what I understand this is an awesome sign. We had been seeing improvements in her the past 2 moths. The thing I think made all the difference is that her Lyme is being treated and the treatment seems to be working for that. With the Lyme under control I think the PANDAS is on its way out. This has been a long road, and I don't know if we are at the end of it or not, but it looks like we are at least seeing the light at the end of the tunnel!! Never give up. You never know what is around the next corner. SSS 1 Link to comment Share on other sites More sharing options...
SSS Posted July 29, 2014 Report Share Posted July 29, 2014 Wow! So great to hear! :-) Link to comment Share on other sites More sharing options...
chubbermommy Posted July 30, 2014 Report Share Posted July 30, 2014 Awesome!! :) I'm so happy for you! Thanks for sharing, and keeping hope alive. Link to comment Share on other sites More sharing options...
ktdommer Posted July 30, 2014 Report Share Posted July 30, 2014 Makes me hopeful to read stories like yours. My son is also dealing with Lyme and PANS. He's done 5 months of IVIG so far. Congrats! Link to comment Share on other sites More sharing options...
nitshel Posted August 26, 2014 Report Share Posted August 26, 2014 Hi Ambersmommy - can you write a little more about what Lyme treatment worked for you? (I also PM'd you). Also did you try IVIG LD or HD? And lastly what helped the Insurance Co. pay for the treatment - did a neuro write the prescription? Thanks - and so happy to hear the news about your child - gives all of us hope....!!! Link to comment Share on other sites More sharing options...
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