thenmama Posted November 21, 2011 Report Share Posted November 21, 2011 (edited) xx Edited March 28, 2013 by thenmama Link to comment Share on other sites More sharing options...
MMC Posted November 21, 2011 Report Share Posted November 21, 2011 I'm wondering the same thing, b/c we saw a new immunologist and he mentioned giving pneumovax to measure titers. The follow up appt is 12/12. Not sure what we will do if he recommends this vaccine...makes me nervous. DS was diagnosed immune deficient about 2 years ago. And we wanted to test immune system again to see how things look. He does not get sick a lot, but most of his PANDAS symptoms will not clear. Link to comment Share on other sites More sharing options...
peglem Posted November 21, 2011 Report Share Posted November 21, 2011 We did pneumovax 2X-@ 2 months apart did not get titer rise the 1st time, but did the 2nd time. Two years later, titers were very low again, but did not revax. My daughter has low total IgG (below range low) and deficient in IgG 4. We saw no adverse effects from the pneumovax. Link to comment Share on other sites More sharing options...
eljomom Posted November 21, 2011 Report Share Posted November 21, 2011 Our immuno. suggested giving the adult dose of a vaccination....I guess pneumo??? DD's IgG is normal, but some of her titers that were tested for strep pneumo were a bit low. According to our first consult with a pandas doc, they were "fine" and "she responds well" and our second pandas doc didn't blink and eye at them either. Then the immuno. was dotting marks next to a bunch of them, saying they were low.....but I too have heard NO VACCINATIONS, so it scares me to try this wiht a pandas child JUST to see if they respond to vaccinations. I mean, how will this honestly help with the AUTOIMMUNE situation? Maybe help to get IVIG covered, but probably at low dose for immune deficiency... Link to comment Share on other sites More sharing options...
kimballot Posted November 21, 2011 Report Share Posted November 21, 2011 (edited) I have received BOTH recommendations from very reputable PANDAS docs. One psychiatrist told me to revaccinate, the other, an immunologist, said "no way". We did not do it. Like you, my son was immune deficient enough and had enough physical illnesses to make him a candidate for IVIG, and the insurance covered it without revaccinating.... so we just did IVIG. Edited November 22, 2011 by kimballot Link to comment Share on other sites More sharing options...
cab40 Posted November 22, 2011 Report Share Posted November 22, 2011 (edited) Hmm good questions........ Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
tpotter Posted November 22, 2011 Report Share Posted November 22, 2011 We were told by same Immunologist "no way", and that's the way I felt anyway, because I just believe that if these kids' immune systems are messed up, anyway, why add to the load by messing more with their immune systems. So, no, we did not vaccinate. Link to comment Share on other sites More sharing options...
kimballot Posted November 22, 2011 Report Share Posted November 22, 2011 Hello, Did the IVIG work for the Specific Antibody Immune Deficiency? (low/non immune to pneumococcals?) What dose of IVIG did you have given, and if i may how many times did your child get/need IVIG? I am scared son has this too; they say monthhly low dose, but we may not gett approved - bad ins; also may lose it in a few months. Son has been sick for over 3 years. Now no remission at all - wish we had attacked this earlier but no experts here. Would also like feedback, would be very helpful if IVIG helped specific symptoms with kid swith "SAD", esp behavioral. And how long it took to see improvements. Also I guess really should fidn out if anyone here did NOT see improvements with IVIG with PANDAS/PANS child with SAD (no/low penumococcal immunity) One more ?? Anyone get approval with BCBS PPO? We are in AZ. Thanks so much. I KNOW I WANT to hear only one IVIG needed for this but I know better...son 8, PANDAS possibly PITAND and has this type of immune def. IgG currently low just ove rcutoff so no CVID dx. Thank you.....C My son was very sick by the time he had his first IVIG and it triggered a very bad exacerbation with extreme depression. It took many months to work through that. However, we have continued to do high dose IVIG (1.5 g/kilo) every 8 weeks and he has not had any sinus infections since we began (he had severe chronic sinusitis previously). PANDAS symptoms are down. BUT he does have lots of problems with fatigue. We are currently treating for lyme/ chronic infection and that is most likely the fatigue factor. Link to comment Share on other sites More sharing options...
eljomom Posted November 22, 2011 Report Share Posted November 22, 2011 I know of a mom who's daughter received low dose IVIG and it sent her daughter into a tailspin beyond words. They then did high dose, and it immediately helped. NOT a cure, but did stop the horrific episodes she attributes to the low dose ivig. I am hoping she will chime in here... Link to comment Share on other sites More sharing options...
cab40 Posted November 23, 2011 Report Share Posted November 23, 2011 (edited) thanks for your feedback! Edited March 23, 2012 by cab40 Link to comment Share on other sites More sharing options...
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