JenniferG Posted May 30, 2017 Report Share Posted May 30, 2017 We recently saw Infectious Disease and Dr. B. ID says to do LD IVIG to help the CVID which will decrease infections therefore less flares. Dr. B says HD IVIG for the "PANS Protocol" and the LD will put them in a flare. Experiences? Thanks. Link to comment Share on other sites More sharing options...
Gpookie Posted May 30, 2017 Report Share Posted May 30, 2017 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. tj21 and JenniferG 2 Link to comment Share on other sites More sharing options...
JenniferG Posted May 31, 2017 Author Report Share Posted May 31, 2017 Have you since stopped LD? Or, do you do 6 months on and 3 months off? Did you notice they were sick less often? Link to comment Share on other sites More sharing options...
Gpookie Posted May 31, 2017 Report Share Posted May 31, 2017 We did 2 rounds. Yes, less suck and when they do get sick, they just get normalkidsick.... JenniferG 1 Link to comment Share on other sites More sharing options...
JenniferG Posted May 31, 2017 Author Report Share Posted May 31, 2017 So it's not monthly....forever? Even though they have CVID? Link to comment Share on other sites More sharing options...
Gpookie Posted May 31, 2017 Report Share Posted May 31, 2017 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. tj21 and JenniferG 2 Link to comment Share on other sites More sharing options...
tj21 Posted May 31, 2017 Report Share Posted May 31, 2017 (edited) 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. Edited May 31, 2017 by tj21 JenniferG 1 Link to comment Share on other sites More sharing options...
JenniferG Posted June 1, 2017 Author Report Share Posted June 1, 2017 In a way, it's relieving to know why they are always sick. But, now, to make the decision as to which IVIG route to take is making us crazy. tj21 1 Link to comment Share on other sites More sharing options...
JenniferG Posted July 18, 2017 Author Report Share Posted July 18, 2017 So we did .6g/kg a week ago yesterday. It put both boys in a flare. I left a message for Dr. B, but he hasn't returned the call. I am waiting to hear back from ID (that is who we did it through). Any suggestions? i put them on Motrin in the meantime. Would I continue with the LD in 4 weeks? Will things get better as it wears off and then get worse with next infusion?? Thanks, Link to comment Share on other sites More sharing options...
tj21 Posted July 18, 2017 Report Share Posted July 18, 2017 @jenniferG - Sorry to hear. Did they suggest steroids if flaring after LD ? You might search (in your spare time, right?!) the forum here, there was a lot about IVIG in the past. We're still waiting to hear back from our Immunologist. ~Tracy Link to comment Share on other sites More sharing options...
JenniferG Posted July 19, 2017 Author Report Share Posted July 19, 2017 On 5/30/2017 at 7:22 PM, Gpookie said: 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. So we just did our first and they flared. It was .5. Do you think it was the HD or LD that did it for your kiddos? Link to comment Share on other sites More sharing options...
tj21 Posted April 21, 2018 Report Share Posted April 21, 2018 (edited) Hi - Any updates on LD? DS18 flared after 2nd low monthly "maintenance" dose (following HD in Jan. 2018, after which he was almost symptom free). Appealing insurance to combine LD's to make one HD. Edited April 21, 2018 by tj21 clarified info Link to comment Share on other sites More sharing options...
JenniferG Posted April 22, 2018 Author Report Share Posted April 22, 2018 We did 3 doses of LD and stopped. It only made things worse. We just did our 4th HD and are doing very well!! Getting less sick, less anxiety, less OCD. I have twin boys and they are about 3lbs difference. And the dose is 5 grams different. I am planning on asking to bring up the lesser one. I see a big difference with just the 5 grams. They are supposed to be on 1g/kg. Ends up being 1.1 and .9 with their current weight. Their LD dose was .6g/kg. It is amazing what such a small difference makes. They do flare though with each infusion for about 3-5 days. With LD it was 3 weeks. Link to comment Share on other sites More sharing options...
tj21 Posted April 22, 2018 Report Share Posted April 22, 2018 Thanks, @JenniferG. Are you covered by insurance for the HD? March LD was .4g/kg. and I think just stimulated his immune-system rather than rebooted or modulated it. He's had HD 2x at 1.0g/kg, and the Jan. 2018 HD was .75g/kg daily for 2 days, and it worked the best. No flaring after any of the HD, but nausea and headache so we give Zofran ahead of time now. Link to comment Share on other sites More sharing options...
JenniferG Posted April 22, 2018 Author Report Share Posted April 22, 2018 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. Link to comment Share on other sites More sharing options...
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