lss Posted December 28, 2008 Report Share Posted December 28, 2008 EAMom and Buster, Wanted to know if you have any insight to this link and what if any do you think it has to do with our kids with Pandas http://www.immunedisease.com/patients-and-...deficiency.html Linda Link to comment Share on other sites More sharing options...
Betty04 Posted December 28, 2008 Report Share Posted December 28, 2008 EAMom and Buster, http://www.immunedisease.com/patients-and-...deficiency.html Linda Linda, I was very interested in your post since my 4 year old was recently diagnosed with CVID and monthly IVIG was recommended. He has low IgA and IgG, and subclases IgG1 and IgG3 are low. We are currently waiting for lab results from a second opinion from an immunologist to see if this diagnosis is confirmed. The first immunologist we saw did believe in PANDAS but the second opinion one was very clear with me that she does not! I have always seen a connection between my son's tics and his immune system. He had an explosive onset after receiving the flu shot last year and has a history of sinus/ear infections that coincide with tic episodes. I have been curious if other PANDAS parents have had the IGG levels of their children checked? I am still trying to figure out any relationship? My son was doing extremely well on Azithromycin 250mg daily as he immediately improved on antibiotics and continued to improve to approximately 90%. BUT then we moved cross country and I am not sure what triggered his tics to worsen (maybe environmental allergies as in the east coast we were in the winter months and in my own (clean, air filtered) hom but then we were with family in San Diego for 1 month and now movved into a rental home in the bay area of SF)? I am confused and discouraged that my son lost all the gains he made with Azith and now am questionning the PANDAS connection and why I am even doing all the supplements and vitamins and a gluten/casein/soy/nut free diet when he is worse than he ever has been! I am setting up a phone consult with Dr K next week to see what his opinion will be regarding my son. If he does not feel he has a PANDAS/PITANDS component then I am not sure I can continue the extreme diet and supplements since nothing I am doing is helping! However I am not sure what the alternative is? Sorry for venting, and possibly stealing the point of your post... however I am extremely interested in your question for obvious reasons. I will repost an update of my son's lab results and any feedback for Dr K that may be useful to others. Thanks for listening! Link to comment Share on other sites More sharing options...
amy s Posted December 28, 2008 Report Share Posted December 28, 2008 This is an interesting article. I believe there is something else wrong with my dd's immune system other than this autoimmune issue with PANDAS. She also had glomerulonephritis as a 3 year old and has had constant infections of one sort or another. When I took her to the rheumatologist I did ask about Ig testing and discussed my concerns (probably could have gotten more detailed Ig testing if I would have taken her to an immunologist or maybe infectious disease doc?) but mainly I was worried about an IgA deficiency because you cannot get IVIg if you have an IgA deficiency (and the rheumatologist agreed it was good to test given two autoimmune problems and constant infections)...so anyway, they did basic immunology testing for IgA, IgG, IgM and c3 and C4 levels, all came back normal. But they did not do the specific IgG testing which this article talks about. Anyway, interesting... Link to comment Share on other sites More sharing options...
lss Posted December 28, 2008 Author Report Share Posted December 28, 2008 Amy, Did you speak with Dr. K regarding the IVIG? I'm curious, because my sons tests results show normal for the IGA, and for the Tissue Transglutaminase IGG, IGA but high (51) for the IGG. Tell me why they can't have IVIG. We are considering having it done this summer. I would think that having the IVIG would actually help, but I may be wrong. Linda Link to comment Share on other sites More sharing options...
amy s Posted December 29, 2008 Report Share Posted December 29, 2008 Amy, Did you speak with Dr. K regarding the IVIG? I'm curious, because my sons tests results show normal for the IGA, and for the Tissue Transglutaminase IGG, IGA but high (51) for the IGG. Tell me why they can't have IVIG. We are considering having it done this summer. I would think that having the IVIG would actually help, but I may be wrong. Linda Hi, Well, just real quick reply here...I'm cooking. Anyway, some selective IgA deficiencies cannot have IVIg due to anaphylactic reaction to having IgA introduced into the body. Check out this link real quick... http://www.immunedisease.com/patients-and-...deficiency.html This paragraph taken from that site. Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals. That's why I made sure my dd was tested before IVIg. I don't know what Dr. K does. I just know this is on all the sites regarding selective IgA deficiency (which I suspected in my dd). Gotta go...liver and onions burning. regards, amy s Link to comment Share on other sites More sharing options...
amy s Posted January 5, 2009 Report Share Posted January 5, 2009 Amy, Did you speak with Dr. K regarding the IVIG? I'm curious, because my sons tests results show normal for the IGA, and for the Tissue Transglutaminase IGG, IGA but high (51) for the IGG. Tell me why they can't have IVIG. We are considering having it done this summer. I would think that having the IVIG would actually help, but I may be wrong. Linda Hi, Well, just real quick reply here...I'm cooking. Anyway, some selective IgA deficiencies cannot have IVIg due to anaphylactic reaction to having IgA introduced into the body. Check out this link real quick... http://www.immunedisease.com/patients-and-...deficiency.html This paragraph taken from that site. Patients with IgA Deficiency are often considered to be at increased risk of anaphylactic reactions when they receive blood products (including IVIG) that contain some IgA. This is thought to be due to IgG (or possibly IgE) anti-IgA antibodies which may be found in some of these people. However, it has been observed that many patients with IgA deficiency do not have adverse reactions to blood products or IVIG. There is no agreement among experts in this field regarding the magnitude of the risk of these types of reactions in IgA deficiency, or the need for caution or measurement of anti-IgA antibodies before administration of blood or IVIG to these individuals. That's why I made sure my dd was tested before IVIg. I don't know what Dr. K does. I just know this is on all the sites regarding selective IgA deficiency (which I suspected in my dd). Gotta go...liver and onions burning. regards, amy s Wow, coming back to read this...I am really confused. What I said and posted doesn't seem to make sense... Anyway, by now I'm sure you figured out what I was trying to say. Basically I had read a lot about selective IgA deficiency and was afraid that my dd might have it. The reasons were because she'd had so many illnesses and two of which were autoimmune (glomerulonephritis and pandas) in nature so that's why I was reading up on what could be wrong with her immune system to allow her to get pandas to begin with. I was afraid that she might have selective IgA deficeincy and read that when one has that they could have an anaphylactic reaction to IVIg. Anyway, odd...here in the paragraph that I snipped from that site, it says that experts do not necessarily caution the administration of IVIg in individuals with IgA deficency. I didn't even see that part when I did that last week. Other things I've read did caution against IVIg in those with IgA deficency. I just felt better getting it tested before proceeding with IVIg. Sounds like (???) your child's IgA was normal to me...but I don't understand why the tTg IGG would be high considering that tissue transglutaminase is tested in those with IgA deficency celiac disease. I'm kinda confused.... is the tTg IGG high or the IgA? Maybe there are other reasons it can be high??? Have you talked to your doctor about this since you last posted? The 'high' 51 level....what are the normal parameters, do you know? I really don't know what all this means. I THINK that IVIg would help if it were celiac disease...but if it is related to being IgA deficient...I don't know. I would think they would be more cautious in giving IVIg or something. But perhaps I'm wrong... good luck and let me know what you find out!!! Link to comment Share on other sites More sharing options...
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