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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.

 

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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.

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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.
 

Edited by tj21
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  • 1 month later...

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,

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@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

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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?

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  • 9 months later...

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 by tj21
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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. 

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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. 

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