tj21 Posted April 22, 2018 Report Share Posted April 22, 2018 3 hours ago, JenniferG said: They would, at any dose, but my physician is not in network. So I have to meet my out-of-pocket and out of network deductible. Which is $16,000 for the year. Got it. Our physician is out-of-network also, but we're doing IVIg w/a company in-network. If insurance denies, will decide if we want to risk another LD (have them approved every 4 weeks until November). Link to comment Share on other sites More sharing options...
JenniferG Posted April 22, 2018 Author Report Share Posted April 22, 2018 Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing. tj21 1 Link to comment Share on other sites More sharing options...
tj21 Posted July 5, 2018 Report Share Posted July 5, 2018 We got HD IVIg approved for DS18 after 2 more appeals b/c LD was triggering flares. Now having extreme flare, after 4th HD IVIg 2 weeks ago. Could it be cooincidental with exposure to virus/bacteria, having 2nd laryngitis-like symptoms that preceded loud screaming tics and head-jerking? HD IVIg in Jan. 2018 was a miracle, most symptoms abated. Flared after LD IVIg in March 2018. Link to comment Share on other sites More sharing options...
MaryAngela Posted July 5, 2018 Report Share Posted July 5, 2018 My DS 13 received 16 weekly LD (1/4 of HD) starting last November. It was extremely frustrating, because he would flare for 3-4 days, then start getting better, but would flare each time he had the treatment. In May of 2018 he had a HD. Huge improvement, which lasted about 6 weeks, then he began to decline. Had another HD two weeks ago. It was like magic. Immediate improvement. He will now receive monthly HD until the end of this year. Apparently, this is AE protocol. Could take 18 months. He is about 80% improved. His symptoms were severe. tj21 1 Link to comment Share on other sites More sharing options...
tj21 Posted July 5, 2018 Report Share Posted July 5, 2018 Thanks, @maryangela . Just spoke w/DS18's PANS provider. Confirmed that b/c he was sick going into this latest HD IVIg, it will take longer for everything to calm down. We'll be doing HD every 3 months through November 2019. Good to hear about your DS13. We were also 80-90% improved January-March. Trying to get this current infection under control now. MaryAngela 1 Link to comment Share on other sites More sharing options...
Vics Posted March 6, 2019 Report Share Posted March 6, 2019 I am new to all of this. My daughter is still in the early stages of diagnosis. But I was wondering what is LD and HD? What do the letters stand for? Link to comment Share on other sites More sharing options...
tj21 Posted March 6, 2019 Report Share Posted March 6, 2019 LD = low dose HD = high dose Link to comment Share on other sites More sharing options...
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