Guest guest Posted April 21, 2012 Report Share Posted April 21, 2012 We R Using it. It is helping his immune #'s. RuthSent from my iPhone Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Is this a prescription? What is it called exactly? I've never heard of ivig orally! I've heard of xymogen oral ig 1000 is that what you are talking about? Thanks! Pam Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Or could he be referencing this product which is oral? http://www.proliantinc.com/ Proliant is a bovine product marketed/patented as Immunolin see, http://www.immunolin.com/ > > Is this a prescription? What is it called exactly? I've never heard of ivig orally! I've heard of xymogen oral ig 1000 is that what you are talking about? Thanks! Pam > > Sent from my iPhone > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 WE have been using the Xymogen product. Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Yes it has helped my son as well.......we use gammastan SD WE have been using the Xymogen product. Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Kasey do you use the Gammastan intramuscularly or orally? > > > > > > > > Has anyone used IVIG orally with their child to treat PANDAS? We just got > > an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > > > Any good or bad experiences w/ taking IVIG orally? > > > > Thanks, > > Soraya > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Hi Pam, this is a prescription we got from our DAN, Dr. Megson. Brand name is Gamastan, it's immuno-globulin made from human plasma. The preparation is made for an IV, but Dr. Megson said to give it orally, once a week, taking an antacid 1.5 hours before. Of course after I got off the phone with her I thought of questions, so I directed them to the pharmacist that I got the IVIG from, but he wasn't familiar w/ giving IVIG orally. Soraya Is this a prescription? What is it called exactly? I've never heard of ivig orally! I've heard of xymogen oral ig 1000 is that what you are talking about? Thanks! Pam Sent from my iPhone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Ruth and Kasey,Have you noticed any die-off w/ this oral form?And, do you have to give an antacid before use? If so, what do you use?Thanks,Soraya We R Using it. It is helping his immune #'s. RuthSent from my iPhone Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Opps forgot one question. No, we do not have to give an antacid. We really have seen no bad side effects from the oral immunogolobulin.Ruth Ruth and Kasey,Have you noticed any die-off w/ this oral form?And, do you have to give an antacid before use? If so, what do you use?Thanks,Soraya We R Using it. It is helping his immune #'s. RuthSent from my iPhone Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 I have not noticed any die-off, but it is hard to say, really. WE use antifungals, probiotics, anti-virals, and antibiotics. So, we did at one point have die-off, but I attributed it to the antibiotic. Sorry I can't be of more help here.Ruth Ruth and Kasey,Have you noticed any die-off w/ this oral form?And, do you have to give an antacid before use? If so, what do you use?Thanks,Soraya We R Using it. It is helping his immune #'s. RuthSent from my iPhone Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. Any good or bad experiences w/ taking IVIG orally? Thanks, Soraya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 We did the shots a long time ago when we were still with Dr. G. They hurt something fierce and we got no benefit from it. Stopped after a year.Cheryl Kasey do you use the Gammastan intramuscularly or orally? > > > > > > > > Has anyone used IVIG orally with their child to treat PANDAS? We just got > > an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > > > Any good or bad experiences w/ taking IVIG orally? > > > > Thanks, > > Soraya > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 orally....we give prevacid and hour before and he has to have an empty stomach an hour and a half before and an hour and a half after giving it to him.....not as effective as IVIG....but it does still help..... Kasey do you use the Gammastan intramuscularly or orally? > > > > > > > > Has anyone used IVIG orally with their child to treat PANDAS? We just got > > an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > > > Any good or bad experiences w/ taking IVIG orally? > > > > Thanks, > > Soraya > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2012 Report Share Posted April 23, 2012 My son uses IMIG, is oral immunoglobin new... (an RX) or is it IVIG just given orally? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Just bumping this up. hoping someone using this will respond. I told our DAN about this and he said he would be willing to try this instead of the imig shots if I could find out more about the protocol. can anyone share more of dr. megson's (or other docs having sucsess with oral ivig) dosing/timing. our daughter has also been diagnosed with PANS( myco) and really want to try this before traditional ivig. thanks, Deb > > Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > Any good or bad experiences w/ taking IVIG orally? > > Thanks, > Soraya > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 We have been using oral Ivig (Xymogen) for about 6 mos now. It has been helping bring up his immunoglobulin #'s. It has not, however done anything for PANS symptoms. It does not do anything to remove the antibodies, I guess, so that may be why. We also used it for about 2 years when he was younger and was also showing IgG deficiency. It really helped the. But we did not have PANS. HTH, RuthSent from my iPhone Just bumping this up. hoping someone using this will respond. I told our DAN about this and he said he would be willing to try this instead of the imig shots if I could find out more about the protocol. can anyone share more of dr. megson's (or other docs having sucsess with oral ivig) dosing/timing. our daughter has also been diagnosed with PANS( myco) and really want to try this before traditional ivig. thanks, Deb > > Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > Any good or bad experiences w/ taking IVIG orally? > > Thanks, > Soraya > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 Ruth, did your child develop a rash in the beginning when you started the ivig? Around our 2nd week my son developed a rash that spread over most of his body. I'm not sure it's from the ivig but the only thing that changed once we started ivig was the probiotic, which I stopped, and the rash just got worse. We have been using oral Ivig (Xymogen) for about 6 mos now. It has been helping bring up his immunoglobulin #'s. It has not, however done anything for PANS symptoms. It does not do anything to remove the antibodies, I guess, so that may be why. We also used it for about 2 years when he was younger and was also showing IgG deficiency. It really helped the. But we did not have PANS. HTH, RuthSent from my iPhone Just bumping this up. hoping someone using this will respond. I told our DAN about this and he said he would be willing to try this instead of the imig shots if I could find out more about the protocol. can anyone share more of dr. megson's (or other docs having sucsess with oral ivig) dosing/timing. our daughter has also been diagnosed with PANS( myco) and really want to try this before traditional ivig. thanks, Deb > > Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > Any good or bad experiences w/ taking IVIG orally? > > Thanks, > Soraya > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2012 Report Share Posted May 21, 2012 No we did not get a rash. All three of kids kids were on it when they were little and none got a rash. Wish I could be of more help. RuthSent from my iPhone Ruth, did your child develop a rash in the beginning when you started the ivig? Around our 2nd week my son developed a rash that spread over most of his body. I'm not sure it's from the ivig but the only thing that changed once we started ivig was the probiotic, which I stopped, and the rash just got worse. We have been using oral Ivig (Xymogen) for about 6 mos now. It has been helping bring up his immunoglobulin #'s. It has not, however done anything for PANS symptoms. It does not do anything to remove the antibodies, I guess, so that may be why. We also used it for about 2 years when he was younger and was also showing IgG deficiency. It really helped the. But we did not have PANS. HTH, RuthSent from my iPhone Just bumping this up. hoping someone using this will respond. I told our DAN about this and he said he would be willing to try this instead of the imig shots if I could find out more about the protocol. can anyone share more of dr. megson's (or other docs having sucsess with oral ivig) dosing/timing. our daughter has also been diagnosed with PANS( myco) and really want to try this before traditional ivig. thanks, Deb > > Has anyone used IVIG orally with their child to treat PANDAS? We just got an order through Dr. Megson b/c symptoms kept coming back on azithromax. > > Any good or bad experiences w/ taking IVIG orally? > > Thanks, > Soraya > Quote Link to comment Share on other sites More sharing options...
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