Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 ... That's really interesting news! I've never heard of heard of oral IgG before, do you know if it's the same stuff the use for IvIg and just given orally or a whole new product? Amazing isn't it? Missy www.caringbridge.org/boggiokids <kristinsmith@...> wrote: I've been meaning to post about this for awhile now and keep forgetting. I'm probably just really out of the loop, but I didn't realize until recently that doctors are using oral IgG for severe gastro infections. We personally know two families in Cincy who were given oral IgG for very severe rotovirus and cryptosporidium infections. Thankfully both of these patients had NG tubes and didn't actually have to swallow it - yuck! Then a couple of weeks ago I had another parent tell me that there have been some very small studies where oral IgG has been used in some patients with JRA. Evidently, the initial results have shown that most of these patients were able to significantly reduce steroid usage and there were no reported side effects. It will be interesting to see what the next decade brings! Mom to Hayden, Evan, Conner and Kelsey (all with PID - including Dad!) www.caringbridge.org/vist/smithkids --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 Thanks, . We have a working dx of juvenile arthritis right now and we're searching for ways to minimize pain/meds. The sq has helped somewhat... Our immuno mentioned that, after sq, little amounts of IgG can settle out of the bubbles in the vials. For some patients, he has them squirt it up their nose. Thought that was interesting. mom to CVIDer+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 I know this may seem a little weird but I sometimes swallow some IgG when I have a stomach virus and I often 'snort' some when I have a sinus infection or even when I " m starting to get a cold. It seems to help. I'm on subq gamma for my specific antibody defect. I also have an IgA deficiency. HTH, Anne R Re: Oral IgG ... That's really interesting news! I've never heard of heard of oral IgG before, do you know if it's the same stuff the use for IvIg and just given orally or a whole new product? Amazing isn't it? Missy www.caringbridge.org/boggiokids <kristinsmith@...> wrote: I've been meaning to post about this for awhile now and keep forgetting. I'm probably just really out of the loop, but I didn't realize until recently that doctors are using oral IgG for severe gastro infections. We personally know two families in Cincy who were given oral IgG for very severe rotovirus and cryptosporidium infections. Thankfully both of these patients had NG tubes and didn't actually have to swallow it - yuck! Then a couple of weeks ago I had another parent tell me that there have been some very small studies where oral IgG has been used in some patients with JRA. Evidently, the initial results have shown that most of these patients were able to significantly reduce steroid usage and there were no reported side effects. It will be interesting to see what the next decade brings! Mom to Hayden, Evan, Conner and Kelsey (all with PID - including Dad!) www.caringbridge.org/vist/smithkids --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 Anne, I think I remember you mentioning that you've used IVIG like this before, that is very interesting. My husband has horrible sinuses, maybe someday they'll actually market a nasal spray like this. , I'm sorry I didn't realize that JRA was a possible diagnosis. You should research it and see what you come up with. I know that steroid usage is one of the biggest concerns. Missy, from what I understand they are ingesting the same products that are given through an IV. In these cases they were BMT patients and the infections were quite severe. It is all quite interesting! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 We also " snort " our Ig. It's actually Dr. Och in WA I think, that recommends it to his patients - we do it when the kids are having sinus issues. I think I did hear that they have been working on an oral Ig... but I could be wrong. Dayna Re: Oral IgG Anne, I think I remember you mentioning that you've used IVIG like this before, that is very interesting. My husband has horrible sinuses, maybe someday they'll actually market a nasal spray like this. , I'm sorry I didn't realize that JRA was a possible diagnosis. You should research it and see what you come up with. I know that steroid usage is one of the biggest concerns. Missy, from what I understand they are ingesting the same products that are given through an IV. In these cases they were BMT patients and the infections were quite severe. It is all quite interesting! Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2007 Report Share Posted December 31, 2007 It is Dr Ochs in WA that had recomended my son to take IVIG orally. had some sort of GI virus and all the tests that they did came back neg. He was a few months post BMT. Dr Ochs gave the order to our BMT Doc. What ever this virus was he got over it. He had had it for a while so I was very excited that it worked. This all happened 4 years ago. Also the DR.s in CA at UCLA were working on oral IVIG with my dad for crypto and other GI viruses this all started about 20 years ago. My dad was the guinea pig for a lot of this stuff. He was diagnosed back in the late 60's with hyper IGM. And due to all the studys they did on him he was the first with this to live past 11. And since he is my father you can see he made it a lot longer. So yes there are a few Doc. out there who are very interested in this. I know that some think it works while others think we were crazy. But I believe that it is worth a try. If your insurance will cover it. I know that for my son they told me that it was about $6,000 for as much as they had him take(remember this was a few years ago) > > We also " snort " our Ig. It's actually Dr. Och in WA I think, that recommends it to his patients - we do it when the kids are having sinus issues. I think I did hear that they have been working on an oral Ig... but I could be wrong. > > Dayna > > > Re: Oral IgG > > Anne, I think I remember you mentioning that you've used IVIG like > this before, that is very interesting. My husband has horrible > sinuses, maybe someday they'll actually market a nasal spray like this. > > , I'm sorry I didn't realize that JRA was a possible diagnosis. > You should research it and see what you come up with. I know that > steroid usage is one of the biggest concerns. > > Missy, from what I understand they are ingesting the same products > that are given through an IV. In these cases they were BMT patients > and the infections were quite severe. It is all quite interesting! > > Take care, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 SARRC did a study on oral GG and found it ineffective for the GI problems associated with autism (ie: no greater effect than placebo). It didn't make sense to me -- I expected it to help. - <kristinsmith@...> wrote: I've been meaning to post about this for awhile now and keep forgetting. I'm probably just really out of the loop, but I didn't realize until recently that doctors are using oral IgG for severe gastro infections. We personally know two families in Cincy who were given oral IgG for very severe rotovirus and cryptosporidium infections. Thankfully both of these patients had NG tubes and didn't actually have to swallow it - yuck! Then a couple of weeks ago I had another parent tell me that there have been some very small studies where oral IgG has been used in some patients with JRA. Evidently, the initial results have shown that most of these patients were able to significantly reduce steroid usage and there were no reported side effects. It will be interesting to see what the next decade brings! Mom to Hayden, Evan, Conner and Kelsey (all with PID - including Dad!) www.caringbridge.org/vist/smithkids --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 SARRC did a study on oral GG and found it ineffective for the GI problems associated with autism (ie: no greater effect than placebo). It didn't make sense to me -- I expected it to help. - <kristinsmith@...> wrote: I've been meaning to post about this for awhile now and keep forgetting. I'm probably just really out of the loop, but I didn't realize until recently that doctors are using oral IgG for severe gastro infections. We personally know two families in Cincy who were given oral IgG for very severe rotovirus and cryptosporidium infections. Thankfully both of these patients had NG tubes and didn't actually have to swallow it - yuck! Then a couple of weeks ago I had another parent tell me that there have been some very small studies where oral IgG has been used in some patients with JRA. Evidently, the initial results have shown that most of these patients were able to significantly reduce steroid usage and there were no reported side effects. It will be interesting to see what the next decade brings! Mom to Hayden, Evan, Conner and Kelsey (all with PID - including Dad!) www.caringbridge.org/vist/smithkids --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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