Joan Pandas Mom Posted July 7, 2010 Report Share Posted July 7, 2010 My son is going on 7 weeks post IVIG. He is still so bad, getting worse every day. How do you know if there has been reinfection? I am reading titers are not accurate for many months post IVIG. My son has always been asymptomatic so what do I do? Any suggestions will be much appreciated. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted July 7, 2010 Author Report Share Posted July 7, 2010 Things are worse. Does anyone know how to test for reinfection post IVIG? I have been reading titers are not accurate for many months after. My son has always been asymptomatic. Any comments/suggestions will be greatly appreciated. Link to comment Share on other sites More sharing options...
Mary M Posted July 7, 2010 Report Share Posted July 7, 2010 I'm so sorry Joan. My daughter and a little boy who received IVIg at the same time 3 weeks ago are still both struggling...7 weeks for you and your ds...I'm so sorry! We were contemplating having our dd tested for mycop but the IVIg would make any numbers useless is what we figure. Link to comment Share on other sites More sharing options...
JAG10 Posted July 7, 2010 Report Share Posted July 7, 2010 Joan, Have you received any feedback from dr. k that re-infection is suspected or does he still feel this response, while agony on your family, is still part of the process that leads to successful treatment? Part of me wishes we were all in our own compound together where we could provide some relief for one another other than virtually. Hang in there, honey!!! Jill Link to comment Share on other sites More sharing options...
P_Mom Posted July 7, 2010 Report Share Posted July 7, 2010 Sorry for everyone struggling! Jill, how about your daughter....how is she doing???? Link to comment Share on other sites More sharing options...
CandKRich Posted July 7, 2010 Report Share Posted July 7, 2010 (edited) . Edited August 12, 2013 by CandKRich Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted July 7, 2010 Author Report Share Posted July 7, 2010 The last e-mail I got from Dr. K (last week) said to still wait it out--that there wasn't anything we can do until 8 weeks because of protocol we wouldn't know what worked. Things are so bad now I e-mailed him again this afternoon and begged if there was anything we could do to relieve some of the symptoms. I don't care about protocol or knowing what works, I just want something to work, something to give him some relief. When it gets close to the 8 weeks and still no results (except for a few good days right after the IVIG and I was really hopeful) it gets so hard to keep hopeful. I couldn't sleep last night and I was going through the channels on TV and started watching Mother Angelica on EWTN (I love her). It was about being tenacious, trusting with all your heart and not losing hope. I taped it, I think I need to go watch it again!!! Link to comment Share on other sites More sharing options...
JAG10 Posted July 7, 2010 Report Share Posted July 7, 2010 Sorry for everyone struggling! Jill, how about your daughter....how is she doing???? I hate to even put it down on this thread, but pretty darn good. She's been completely healthy the entire 6 weeks, some weird acne thing flaring and receding in a rapid, odd manor by her hair line, but that is it; good coloring, no livido reticulitis, no skin/nail picking. As far as symptoms, her flares come with excitability (breaded cutlet at the first sight of the waves, jumping and waving arms like a little kid out of nowhere) but they are becoming less and less and less. Her OCD is undetectable right now, just some mild behavior regression and mild learning issues which we have just started to ease back into this week. She's being reasonable and fairly independent with her self help skills. NO psych meds for the first time in 4 1/2 years; that's just unbelievable (I would have had to peel her off the ceiling unmedicated pre-ivig!) No Annoying Orange for over a week!!! Now, if I can just hear her say "Sponge Bob is so immature"....I'll know she's a typical tweeny girl and we've made it! .... her daddy's feelings might be hurt though Link to comment Share on other sites More sharing options...
Fixit Posted July 7, 2010 Report Share Posted July 7, 2010 The last e-mail I got from Dr. K (last week) said to still wait it out--that there wasn't anything we can do until 8 weeks because of protocol we wouldn't know what worked. Things are so bad now I e-mailed him again this afternoon and begged if there was anything we could do to relieve some of the symptoms. I don't care about protocol or knowing what works, I just want something to work, something to give him some relief. When it gets close to the 8 weeks and still no results (except for a few good days right after the IVIG and I was really hopeful) it gets so hard to keep hopeful. I couldn't sleep last night and I was going through the channels on TV and started watching Mother Angelica on EWTN (I love her). It was about being tenacious, trusting with all your heart and not losing hope. I taped it, I think I need to go watch it again!!! I am so sorry you and your daugher are going through this ....truly... i too wish we were closer to the middle or end of the learning curve on this..... even if the docs had listened to me and other moms years ago when i noticed the correlation...we would be so much farther along..... it truly sickens the heart.... i i think....it was nancy d.( i could be wrong) that said it took a full 2 1/2 months.....10 weeks to see anything...and then recovery.... unfortunaley they had to do it again a year later....but....the same thing....10 weeks to see anything...and then recovery..... Keep the Faith!!!!!! Link to comment Share on other sites More sharing options...
Chemar Posted July 7, 2010 Report Share Posted July 7, 2010 Hi I found this on the TS board and figured you probably meant to post it here, so I moved it over for you Link to comment Share on other sites More sharing options...
Chemar Posted July 7, 2010 Report Share Posted July 7, 2010 oops, I see there is already a similar thread here so have merged the two. There is still a link to this on the TS board. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted July 8, 2010 Author Report Share Posted July 8, 2010 Thanks, I post it and then realized I was on the TS board, so I rewrote it. I didn't know how to move it!! oops, I see there is already a similar thread here so have merged the two. There is still a link to this on the TS board. Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted July 8, 2010 Author Report Share Posted July 8, 2010 Thanks for this. I'll try. I decided I am going to bed soon, maybe a good night sleep will help me cope better tomorrow. It is so strange to think at 10 1/2 weeks you can start to see improvements. It is so long. I am amazed it can take that long to get through the system but I guess it does. I haven't heard of anyone on this saying it didn't work at all. The last e-mail I got from Dr. K (last week) said to still wait it out--that there wasn't anything we can do until 8 weeks because of protocol we wouldn't know what worked. Things are so bad now I e-mailed him again this afternoon and begged if there was anything we could do to relieve some of the symptoms. I don't care about protocol or knowing what works, I just want something to work, something to give him some relief. When it gets close to the 8 weeks and still no results (except for a few good days right after the IVIG and I was really hopeful) it gets so hard to keep hopeful. I couldn't sleep last night and I was going through the channels on TV and started watching Mother Angelica on EWTN (I love her). It was about being tenacious, trusting with all your heart and not losing hope. I taped it, I think I need to go watch it again!!! I am so sorry you and your daugher are going through this ....truly... i too wish we were closer to the middle or end of the learning curve on this..... even if the docs had listened to me and other moms years ago when i noticed the correlation...we would be so much farther along..... it truly sickens the heart.... i i think....it was nancy d.( i could be wrong) that said it took a full 2 1/2 months.....10 weeks to see anything...and then recovery.... unfortunaley they had to do it again a year later....but....the same thing....10 weeks to see anything...and then recovery..... Keep the Faith!!!!!! Link to comment Share on other sites More sharing options...
momto2pandas Posted July 8, 2010 Report Share Posted July 8, 2010 Joan - so sorry that you and your son are going through this. It so happens that I asked Dr. McGhee about this this morning. My kids are supposed to be on monthly IVIG, but instead it has been irregular for various adminstrative reasons (hopefully done with now). It seems like every time we get way too far out from the last IVIG - just a couple of days before the next one, they start to get symptoms again (mild, but noticeable), then get better with the next IVIG. I asked Dr. McGhee if this could be because they still harbor strep or are getting reinfected any time their levels get low. He said that both were possible, but that there was no way of knowing. No way to read the titers, etc. - I think he said for at least 3 months post IVIG treatment. He also said that there was basically no way of knowing what might be due to reinfection or continuing infection, and what might be due to some other immune phenomenon that accompanies the treatment. He said that we'd just have to make our best judgments clinically - try things and figure out what worked best. Given that my kids are immunodeficient and have had chronic strep, to him the first thing to try would be increasing the frequency of IVIG. Dr. McGhee also said that we'd need 3 months of doing things in a steady way (unlike we have been) to see what we had at all, since it can take the body that long to adjust to IVIG treatment. If we still see the pattern during the last 3-4 days of every month after that, we'll push the IVIGs closer together (ugh). As much as I lament that my kids have immune deficiencies and may possibly have to go through these treatments long term, the one upside to it is that IVIG and antibiotics are not optional for us. It's still hard to be early on the PANDAS learning curve , so I know that it must be harder when none of the treatment options are "standard" or fully understood. Link to comment Share on other sites More sharing options...
Megs_Mom Posted July 8, 2010 Report Share Posted July 8, 2010 Hi Joan - This must be so hard - i am so very sorry to hear that he has no relief yet. I apologize if I am asking questions that you have already posted! I know you have enough on your hands without repeating yourself. I am wondering if you did full dose (1.5) IVIG? Some here have issues with the lower dose of IVIG for immune deficiency. Also, did you do a 5 day steroid burst, and did your son respond well to that before IVIG? Was he protected with full strength abx after the IVIG? Finally, if you did high dose IVIG without seeing any positive result, have you done Lyme testing? Our doctors (2 of them) feel that PANDAS and Lyme have very similar presentations in children. Lyme is also very hard to diagnose and test for - but I don't think IVIG really helps Lyme - that is an abx treatment protocol, often with different or multiple abx. I know that WorriedDad had decent results from early IVIG, but they did not last. I believe that his son uses the Saving Sammy dose of abx - I'm sure it is hard to get that prescription, but some here may be able to lead you to a doctor that is willing to try. Keeping my fingers crossed that it is just a matter of time! Link to comment Share on other sites More sharing options...
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