Hayley Posted February 1, 2013 Report Share Posted February 1, 2013 I'm curious to know how common immune deficiencies are among PANDAS kids. Mine has CVID (diagnosed through PANDAS bloodwork though clinical presentation not indicative of the condition). Anyone else have this or another PID? If so, what's low? And, for those who have done IVIG, did your numbers hold with one treatment or did you need to repeat? My DD's IgG was below 400 and her IgA below 20 (she's 7). IVIG (HD) 7.5 weeks ago and both are currently in normal range though too soon to tell, I'm told, if they'll hold or if we'll need to repeat. Anyone willing to share their expeirences, please respond or PM me. Thanks! Link to comment Share on other sites More sharing options...
mnpansmama Posted February 1, 2013 Report Share Posted February 1, 2013 I am new here, but our son has Hypogammaglobulinemia with IgG subclass 2 deficiency, discovered through a series of test for PANDAS. We may be candidates for IVIG, but Children's Hospital(Minnesota) protocol is to first have him get a pneumococcal vaccination to "see" if that brings his numbers up any. We won't be giving him another vaccination, so we're kind of stuck at the moment. Did you have to get a vaccination prior to getting the IVIG approved? How did your child respond to the IVIG? Link to comment Share on other sites More sharing options...
bigmighty Posted February 1, 2013 Report Share Posted February 1, 2013 DS 14 PANDAS diagnosed at age 12. CVID discovered through labs. Overall IgG 600 at present. Below desired minimum but considered too high to treat with IVIG at present. In a holding pattern just having labs every eight weeks. How are you guys doing? Link to comment Share on other sites More sharing options...
blakes_mom Posted February 1, 2013 Report Share Posted February 1, 2013 DS 11 PANDAS has low IGG 560 ( normal range is 640 - 1330 ) no IVIG at this point. Just checking labs every 3 months and taking zithromax 3 x per week.Also has chronic elevated ASO and dnase B. Link to comment Share on other sites More sharing options...
tpotter Posted February 1, 2013 Report Share Posted February 1, 2013 Kimballot just posted about this within the past few days. You may want to look for her thread. Link to comment Share on other sites More sharing options...
Hayley Posted February 2, 2013 Author Report Share Posted February 2, 2013 DS 14 PANDAS diagnosed at age 12. CVID discovered through labs. Overall IgG 600 at present. Below desired minimum but considered too high to treat with IVIG at present. In a holding pattern just having labs every eight weeks. How are you guys doing? We have been doing great. I'd say for the past four weeks or so she's been almost back to herself. Even came through a 24 hour stomach bug ok early last week. Yesterday afternoon and today, though, she definitely seems off. I guess we'll see... I think we'll do her labs again in another month or so as well. Link to comment Share on other sites More sharing options...
mdmom Posted February 2, 2013 Report Share Posted February 2, 2013 DS15 (PANS dx) also has a CVID dx. IGG levels hover around 600. Normal for his age would be no lower than 946. He qualified for insurance coverage for IVIG with his low levels, so we just started IVIG every 4 weeks. Doing high dose right now, but wondering if we will eventually drop to a maintenance dose to address immune deficiency only, as the high dose obviously would help with both the autoimmune issue and the immune deficiency, but high dose may be too much long-term. Not sure if the IGG levels will stabilize or if he will always need IVIG, like most people with a primary immune deficiency. Link to comment Share on other sites More sharing options...
bigmighty Posted February 2, 2013 Report Share Posted February 2, 2013 DS 14 PANDAS diagnosed at age 12. CVID discovered through labs. Overall IgG 600 at present. Below desired minimum but considered too high to treat with IVIG at present. In a holding pattern just having labs every eight weeks. How are you guys doing? We have been doing great. I'd say for the past four weeks or so she's been almost back to herself. Even came through a 24 hour stomach bug ok early last week. Yesterday afternoon and today, though, she definitely seems off. I guess we'll see... I think we'll do her labs again in another month or so as well. Yay! Crossing my fingers for ongoing progress. Link to comment Share on other sites More sharing options...
albmum Posted February 3, 2013 Report Share Posted February 3, 2013 My Ds 9,has IGg subclass 4 : 1490(max was 900 according the lab but in the wikipedia is given 1300.).We dont know if this is an immune disorder ?!?!? Link to comment Share on other sites More sharing options...
Hayley Posted February 3, 2013 Author Report Share Posted February 3, 2013 I am new here, but our son has Hypogammaglobulinemia with IgG subclass 2 deficiency, discovered through a series of test for PANDAS. We may be candidates for IVIG, but Children's Hospital(Minnesota) protocol is to first have him get a pneumococcal vaccination to "see" if that brings his numbers up any. We won't be giving him another vaccination, so we're kind of stuck at the moment. Did you have to get a vaccination prior to getting the IVIG approved? How did your child respond to the IVIG? We did not have to retest pneumococcal, I think becuase her numbers were SO low. We only did the one IVIG (8 weeks ago) so far and she did great with that. Nothing else is scheduled. We're all watching to see if it holds with her. Her immunologist suggested that if she can't keep her IgG numbers up, he would potentially want to retest pneumococcal vaccines down the road, along with some other tests and potentially start her on more frequent IVIG, but for now we're in a holding pattern. Link to comment Share on other sites More sharing options...
tpotter Posted February 3, 2013 Report Share Posted February 3, 2013 My Ds 9,has IGg subclass 4 : 1490(max was 900 according the lab but in the wikipedia is given 1300.).We dont know if this is an immune disorder ?!?!? I don't know, but I would wonder if he is actually reacting to something like an infection? Typically, if one has a high total IgG, it means they've been exposed to an infection, so maybe the IgG subclass 4 is specific for a specific area. I just googled it, and it mentions that LOW subclass 4 is hard to determine what it relates to, but at least one study has indicated it may be respiratory. So, maybe it's that there's some kind of respirator infection? Again...I am just deducing on this one. Link to comment Share on other sites More sharing options...
albmum Posted February 3, 2013 Report Share Posted February 3, 2013 Thanx tpotter, In fact my ped told me it is related to his high level of IGe but didn't give.any further explanation.my son is allergic to dustmites. Link to comment Share on other sites More sharing options...
albmum Posted February 3, 2013 Report Share Posted February 3, 2013 One question for Igg subclass 4 ;1400 is a very high according to your peds???? Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now