szcasey Posted June 13, 2013 Report Share Posted June 13, 2013 My 10yo DS has had 11 IVIG treatments at Dr. B's office. We saw huge gains after IVIG #2. I'd say DS was 95% better but IgG levels were only slowly improving. During this time, October through December we'd see/hear mild vocal/motor tics but nothing like onset at 4 years of age. Since 1/2013, we've seen a slow but steady decline. I'm wondering if it's due to switching from Gammagard to Octagam. I'd love to hear experiences of others who have made the change from Gammagard to Octagam. Thanks! Link to comment Share on other sites More sharing options...
szcasey Posted June 16, 2013 Author Report Share Posted June 16, 2013 Bump Link to comment Share on other sites More sharing options...
LaurenK Posted June 16, 2013 Report Share Posted June 16, 2013 Has your child gotten sick. Does he receive monthly IVIG? Link to comment Share on other sites More sharing options...
szcasey Posted June 17, 2013 Author Report Share Posted June 17, 2013 He gets IVIG every 8 weeks. The headaches are debilitating. And his symptoms are getting worse. No illnesses. Only change is Octagam. Link to comment Share on other sites More sharing options...
norcalmom Posted June 19, 2013 Report Share Posted June 19, 2013 ask for gaumunex. I attended a immune deficiency conference - and the attendess - that were both Primary immune deficient and secondary immune deficient adults - mentioned that gaumunex has a reputation as being easier to tolerate. Most of these folk have been taking IVIG for many years. DS had gaumunex first time - he had about 2 days of the migranine and nauseas, and it was bad. BUT the second IVIG he had Gammaguard - and it lasted for 2 FULL WEEKS - if I didn't wake him in the middle of the night to give him advil (this was 10 days after the IVIG - I I thought it might be safe to sleep through the night ) he woke up vomiting with a migraine (and once that starts it hard to get in front of the pain) You can also ask for prednisone before and after - which we had a 2 pills after each time (second time didn't help much, I think he threw them up). Good luck and let us know if it helps. Link to comment Share on other sites More sharing options...
peglem Posted June 19, 2013 Report Share Posted June 19, 2013 The infusion center that my daughter goes to has just recently switched to Octagam as the product on hand in the pharmacy. (Its a hospital outpatient center). The nurses told me that it currently is only available in a 5% solution which means the total fluid volume to be equivalent to the same dose of the 10% solution is doubled. I had her immunologist order what she had already been getting w/ no substitutions, so she didn't have to switch brands. She gets Privigen right now, which she tolerates better than the Gammagard that she used to get. Link to comment Share on other sites More sharing options...
szcasey Posted July 6, 2013 Author Report Share Posted July 6, 2013 Thanks, everyone for your replies! Link to comment Share on other sites More sharing options...
mdmom Posted July 6, 2013 Report Share Posted July 6, 2013 My son gets HD-IVIG every 4 weeks - we use Gammaked, which is identical to Gamunex. Octagam is stabilized with sugar, some other brands are not. Here is a good chart comparing each brand: http://www.bdipharma.com/Comparison%20Chart%202013/Intravenous_Immune_Globulin.pdf Lots of people post that their children have side effects from IVIG. My son has never had nausea, vomiting or headaches with his monthly IVIG treatments. Our doc also does not use steroids. Instead, our doc pre-hydrates before each infusion with 400mg Mag Sulfate/25g Vitamin C. We also dose 600mg Ibuprofen every 6 hours. Link to comment Share on other sites More sharing options...
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