bronxmom2 Posted October 16, 2009 Report Posted October 16, 2009 So, my mom finally accepts that my son has PANDAS, now she's asking just what is the IVIG, why will it help, and what can we expect? (She's coming to help take care of my baby when I bring my son to Georgetown for IVIG...) Embarrassing... but I find I can't really answer her satisfactorily. Anyway, can anyone give me a concise explanation (or a link to one) of the mechanism of IVIG (and PEX)? (I'm beginning to suffer from PEX envy.) Thanks!
dcmom Posted October 16, 2009 Report Posted October 16, 2009 I am curious, why did dr L prescribe IVIG as compared to PEX? When will you be at Gtown?
ShaesMom Posted October 16, 2009 Report Posted October 16, 2009 Here is a link to the IDF's explanation of IVIG: http://www.primaryimmune.org/publications/...pats/e_ch18.pdf
bronxmom2 Posted October 16, 2009 Author Report Posted October 16, 2009 Ugh, I don't know, I'm driving myself crazy wondering the same thing. I will be there the week after you.
faith Posted October 16, 2009 Report Posted October 16, 2009 bronxmom, I totally sympathize, I don't know much myself, but, I guess a real simple explanation would be that ...."your child has an autoimune response to the strep bacteria where his antibodies over react to the strep and mistakenly attack the basal ganglia of his brain resulting in some of the symptoms you see. So his antibodies need to be replaced with new ones. This is done intraveniously with the pooled immunoglobin of healthy donors. This is done over a period of hours over two days. ...... and all this has really taken its toll on me old woman, so shut the @#$% UP!!!........... (sorry, just kidding, I got carried away, lol)....... .....(hey I might have to use this myself one day! ...... Also, here is a good page of Q and A about IVIG that you could print out. http://www.cidpusa.org/ivig.html Faith
Debbie1 Posted October 16, 2009 Report Posted October 16, 2009 Hi bronxmom, I don't think I can offer a good explanation of IVIG and PEX as we are not at the point yet. But I do want to wish you and your family much success with the upcoming IVIG. Hoping all goes smoothly and your child has a speedy recovery. I will be thinking of you! Please keep us posted on your progress. Debbie
bronxmom2 Posted October 16, 2009 Author Report Posted October 16, 2009 I decided to pay for a phone consultation this afternoon to ask her.
dcmom Posted October 16, 2009 Report Posted October 16, 2009 Oy! Let me know what she says. This is never ending. Gtown was supposed to test my dd's pneumococcal titers. Their lab (or Mayo) changed it to a test for Mycoplasma pneumonia. So I have been battling within myself whether to find some local immunologist and beg them to see her before pex on Monday. I decided I can't do that to her. I hope I can have them do it in the hospital.....
bronxmom2 Posted October 17, 2009 Author Report Posted October 17, 2009 Got my answer. Turns out she thought that because he'd been sick so often, there was a very good chance he would have an PID or some other significant immune deficiency, in which case IVIG would apparently be a better treatment than PEX. Since he does not have a PID, She agrees that PEX is the way to go, and we are trying to switch it. Phew. I don't quite know what to think, but what a roller coaster.
dcmom Posted October 17, 2009 Report Posted October 17, 2009 Wow. So if a child has a healthy history- she prefers pex. That would make me think if a child is sick frequently, they should get both. Are you happy with this? Can you add anything else? When will you be going in? Did you already have a consult with HemOnc at Georgetown? I think you have to do that first.
faith Posted October 17, 2009 Report Posted October 17, 2009 bronxmom, you mean that you were going to to IVIG, but now tht you called to ask about it, she changed it to PEX? She didn't clarify about the PID before? Faith
Buster Posted October 18, 2009 Report Posted October 18, 2009 Hi Bronxmom2, can anyone give me a concise explanation (or a link to one) of the mechanism of IVIG (and PEX)? The post by ShaesMom is quite good. With PANDAS, it is thought that there are three things going on: 1) The production of an anti-host antibody in response to a sentinal GABHS infection 2) A failure of T regulatory cells to control the replication of the faulty antibody 3) A breach of the blood brain barrier that allows the faulty antibody in the blood to reach neuronal tissue Short term prednisone has an effect on #3 (i.e., lowers inflammation) and can also have an effect on #2 (by suppressing immune response similar to what T regulatory cells are supposed to do). It is unclear if prednisone affects #1. Plasma Exchange (PEX) directly remove antibodies (i.e., affect #1) and can have an anti-inflammatory effect (i.e., #3) if the cause of the inflammation is antibody related. IVIG has significant anti-inflammatory effect (i.e. affects #3) and also affects T-regulatory cells (i.e., #2) (see Kessel's paper http://www.jimmunol.org/cgi/reprint/179/8/5571 ). It is possible for IVIG to affect #1 (i.e., anti-host antibody production) as well by either providing the correct antibody to take out an antigen (hence reducing bad antibodies) or by overwhelming the immune system with foreign stuff such that the T and B-cells don't produce so many anti-bodies. In any case, the effect of IVIG is thought to be primarily #2 and #3. Regards, Buster
KeithandElizabeth Posted October 18, 2009 Report Posted October 18, 2009 Buster: I just have to say thank you for all of your posts! I always learn so much from you and I definitely miss them when you are not around. Elizabeth
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