pmoreno Posted October 10, 2008 Author Report Share Posted October 10, 2008 My son has had 3 single IVIG's...I was fortunate to have Kaiser(my HMO) do it for me. I feel that my pedi did it because Kaiser mis-diagnosed my son with seizures for 6 months and he kept getting worse. Finally through private testing we found out it was PANDAS (also I had mentioned PANDAS to him in the beginning of all this and he said NO) I am hoping they will do one more for me.... Kerrie needs to tell everyone about her yogurt experience!!! Don't give your kids activa, it has a strep culture in it!! Sarah Sarah - I know that your son has had 3 IVIG's, but I really would like to know how many grams per kg of body weight he has been getting. I've heard it makes a big difference in the success rate. I've heard that when they give smaller doses over a period of time, it helps, but doesn't completely turn things around. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted October 11, 2008 Author Report Share Posted October 11, 2008 My son has had 6 IVIG treatments so far and it's been the same thing with each one. We don't really see anything for the first week following the IVIG. For the next two weeks we see nice things, however minor. Bad things go away or lessen, nice things happen. By the 4th week we see some of the bad that has lessened flare up again, we see stuff come back that he hasn't done in months and just strange stuff over all. That week before an IVIG is always a nervous week for us because we never know what'll happen. THis past one though, he didn't have that rough week, it was just a day or two before that we saw the change. My son is currently getting 15g of Privigen every 4 weeks. He weighs 56 lbs. He has one more IV of Privigen then we are switching to Gamunex. Kerrie I have heard that it makes a big difference the type of immunoglobulin used and I've heard Gamunex is the best - also I have heard from a guy who is doing a study at Yale and from two separate doctors who do IVIG (one in Florida) and Dr. K in Chicago who did our IVIG that smaller doses spread out over a period of time have been proven to only help for short periods of time and then you have to do it again. Supposedly if you give 1 1/2 g/kg of body weight over 2 days it should be much more effective. I guess I'll find out in a few weeks if they were right since Gaby just had hers done a week ago. Pat Link to comment Share on other sites More sharing options...
myrose Posted October 11, 2008 Report Share Posted October 11, 2008 I may be wrong here (so please correct me if I am) but I was always told to NEVER give yogurt while antibiotics?? My daughter took her first antibiotic in or with yogurt (because of the taste) and after 4 days finally got a reaction from the amoxicllin. (she is allergic to it we found out) Anyhow reason being I was told from her former Pediatrician...that it took so long for her to display a reaction is because the yougurt cultures were killing/fighting with the antibiotics....thus making the antibiotic weaker??? Does this make any sense (sure I worded it wrong) At any rate I am confused........ Link to comment Share on other sites More sharing options...
peglem Posted October 11, 2008 Report Share Posted October 11, 2008 I may be wrong here (so please correct me if I am) but I was always told to NEVER give yogurt while antibiotics??My daughter took her first antibiotic in or with yogurt (because of the taste) and after 4 days finally got a reaction from the amoxicllin. (she is allergic to it we found out) Anyhow reason being I was told from her former Pediatrician...that it took so long for her to display a reaction is because the yougurt cultures were killing/fighting with the antibiotics....thus making the antibiotic weaker??? Does this make any sense (sure I worded it wrong) At any rate I am confused........ I would think it more likely that the antibiotic would kill the good bacteria in the yogurt, making it useless as a probiotic. What I have heard is to give probiotics 2-3 hours after the antibiotic (give it time to leave the digestive system) so that you replenish the good bacteria that were killed by the antibiotic on the way through. Link to comment Share on other sites More sharing options...
pmoreno Posted October 11, 2008 Author Report Share Posted October 11, 2008 My son has had 3 single IVIG's...I was fortunate to have Kaiser(my HMO) do it for me. I feel that my pedi did it because Kaiser mis-diagnosed my son with seizures for 6 months and he kept getting worse. Finally through private testing we found out it was PANDAS (also I had mentioned PANDAS to him in the beginning of all this and he said NO) I am hoping they will do one more for me.... Kerrie needs to tell everyone about her yogurt experience!!! Don't give your kids activa, it has a strep culture in it!! Sarah Sarah, I was curious - did they put your son on prophylactic antibiotics right after the first IVIG? and if so - which one? Also about the yogurt and probiotics I heard the same thing - that some actually cause exacerbations - I had a hard time finding one that was recommended (it begins with a B - something like Burgallis maybe? Anyway, I went to Whole Foods and they didn't have anything in kids strength that just had that particular strain - most of them have a mixture of different ones - are you or anyone else aware of where to go for the best kind? Link to comment Share on other sites More sharing options...
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