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Showing content with the highest reputation on 05/31/2017 in all areas
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We did HD on both boys in 20014. The worst PANDAS symptoms dissappeared over night and never came back. After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure. ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID. LD monthly (.5g/kg for 6 months, stop 3 then 6 more months) worked wonders. No more flares, even when ill and on exposure. LD was the best thing.2 points
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Going to our immunologist in July (appt. pushed back 2 times, ugh!) to find this out. DS17 has had two HD only (1.75g and 2g); improvement for ~6 mos., after that doesn't last. IgG levels continue to drop, and flares continue. Hypogamm. dx but don't know why his numbers drop, yet. Glad to hear LD has helped for some; my fingers and toes are crossed for some relief here. About to do 2nd steroid burst.1 point
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We don't know. We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range. My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.1 point
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We did 2 rounds. Yes, less suck and when they do get sick, they just get normalkidsick....1 point