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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).

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  • 2 months later...

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. 

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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.  

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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. 

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  • 8 months later...

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