bigmighty Posted April 17, 2012 Author Report Share Posted April 17, 2012 Wow! This is fantastic-- Your son was part of the NIH study -- and you said he had IVIG twice, one month apart. Were these both w/ the study at NIH? Do you know for sure that both were the real thing? Also, is he still on the Augmentin 875 (twice a day), OR is he now on anything else? -- different antibiotic? Finally, was this all via Dr B? Thanks-- They were six weeks apart - first week in May and mid-June. Both were the real deal and both done by NIH. They placed him on a very low dose of azithro (500 mg 1x weekly) as prophylactic antibiotic after the fist IVIG in May and told us that we could not take a higher dose or any additional antibiotics and remain in the study. Unfortunately, it wasn't sufficient to prevent strep in July. After DS got strep, they added Cefdinir and kept the Azithro. Later, they changed to Amoxicillin and later still, a low dose of Keflex. When we thought DS might have strep again in September, they doubled the Keflex for two weeks and we saw slight improvement. They reduced it and DS did very poorly again. After we officially completed the study in November, we arranged for the ped to increase the Keflex again and scheduled a consult with Bouboulis. He is the one who switched to Augmentin. DS is still on Augmentin 875. Link to comment Share on other sites More sharing options...
P_Mom Posted April 18, 2012 Report Share Posted April 18, 2012 Great news!! So happy for you all! My son also experienced a "flipped switch" recovery so I know exactly what you are saying. Prayers for lasting healing! Link to comment Share on other sites More sharing options...
bigmighty Posted April 18, 2012 Author Report Share Posted April 18, 2012 Also forgot to mention - DS still has his tonsils. Link to comment Share on other sites More sharing options...
coco Posted April 18, 2012 Report Share Posted April 18, 2012 I am so happy with your results!! May I ask about ibf? Did you do liver testing as you went? I always thought you could only do 5-14 days of it periodically. My daughter, too, gets great benefit from it but I am afraid to use it longer. Again, so glad for you! Link to comment Share on other sites More sharing options...
bigmighty Posted April 18, 2012 Author Report Share Posted April 18, 2012 I am so happy with your results!! May I ask about ibf? Did you do liver testing as you went? I always thought you could only do 5-14 days of it periodically. My daughter, too, gets great benefit from it but I am afraid to use it longer. Again, so glad for you! They have only done liver function testing 3x since he started ibf. No problems. The docs did not seem particularly concerned with the long-term use. So glad to be done with it. Link to comment Share on other sites More sharing options...
bigmighty Posted April 18, 2012 Author Report Share Posted April 18, 2012 Well, I hope y'all will pop in and reassure me that we are not making a mistake. We just cancelled IVIG for this coming Mon/Tues. Were able to get on the schedule, tentatively, for late August, just in case the present positive situation does not continue. Sort of freaking out. It has taken me seven months to get this lined up and arrange for insurance coverage and now that it's 1/2 a week away, I just cancelled it. Tell me it was the right thing to do..... Link to comment Share on other sites More sharing options...
DeterminedMomVA Posted April 18, 2012 Report Share Posted April 18, 2012 I think I would have cancelled it too. If the improvements you're seeing had gone away after IVIG I never would have stopped second-guessing myself. I'm stunned that the next available IVIG appt isn't until August, though. That's sobering, since now that my DS has a go-ahead for IVIG with a PANDAS doc I was hoping to get it done much more quickly than that. Hang in there, and enjoy the 'normality'. Link to comment Share on other sites More sharing options...
bigmighty Posted April 18, 2012 Author Report Share Posted April 18, 2012 I think I would have cancelled it too. If the improvements you're seeing had gone away after IVIG I never would have stopped second-guessing myself. I'm stunned that the next available IVIG appt isn't until August, though. That's sobering, since now that my DS has a go-ahead for IVIG with a PANDAS doc I was hoping to get it done much more quickly than that. Hang in there, and enjoy the 'normality'. There were earlier appointments. They had one appt in mid-June and three possibilities for July. August just worked for our calendars. With luck, we will be calling them in July to cancel the appt. anyway. Just wanted to have a fall-back plan in case we are being premature in cancelling. Link to comment Share on other sites More sharing options...
DeterminedMomVA Posted April 18, 2012 Report Share Posted April 18, 2012 Thanks for clarifying. I bet it will feel good to call in July and cancel! Link to comment Share on other sites More sharing options...
bigmighty Posted April 19, 2012 Author Report Share Posted April 19, 2012 Wow! This is fantastic-- Your son was part of the NIH study -- and you said he had IVIG twice, one month apart. Were these both w/ the study at NIH? Do you know for sure that both were the real thing? Also, is he still on the Augmentin 875 (twice a day), OR is he now on anything else? -- different antibiotic? Finally, was this all via Dr B? Thanks-- They were six weeks apart - first week in May and mid-June. Both were the real deal and both done by NIH. They placed him on a very low dose of azithro (500 mg 1x weekly) as prophylactic antibiotic after the fist IVIG in May and told us that we could not take a higher dose or any additional antibiotics and remain in the study. Unfortunately, it wasn't sufficient to prevent strep in July. After DS got strep, they added Cefdinir and kept the Azithro. Later, they changed to Amoxicillin and later still, a low dose of Keflex. When we thought DS might have strep again in September, they doubled the Keflex for two weeks and we saw slight improvement. They reduced it and DS did very poorly again. After we officially completed the study in November, we arranged for the ped to increase the Keflex again and scheduled a consult with Bouboulis. He is the one who switched to Augmentin. DS is still on Augmentin 875. Forgot to mention - NIH did HD IVIG. Many docs do 1.0 or 1.5. NIH did 2.0 - a fairly high dose. Link to comment Share on other sites More sharing options...
kimballot Posted April 20, 2012 Report Share Posted April 20, 2012 I am so happy to hear of your improvement! I am not pushing for IVIG, but I will tell you that my son is also mildly immune deficient and he gets IVIG every 8 weeks, and this has been a blessing for us. He has not had a sinus infection since beginning IVIG (after a lifetime of chronic infection), and this has allowed his brain to heal. We see slight backsliding in his behavior a week or two before IVIG, but we don't really even notice it happening until he gets IVIG and he is so much better after the treatment. My son does continue to have low IgG between treatments, so I am sure the IVIG is needed. I would encourage you to check your son's IgG level and take that into consideration when deciding about another IVIG. Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now