pmoreno Posted October 10, 2008 Report Share Posted October 10, 2008 I need some help out there. My daughter had IVIG last week and in general she seems better than before (She has no more tics at this point) She seems less spacey & more focused most of the time. She seems to be in a good mood most of the time. However, every once in a while (either early in AM or toward evening she seems to get very angry or very sad (like she used to do with her first episode last year). This most recent episode had been pretty mild with mostly tics & lack of concentration, but no real angry outbursts or crying or paranoia. Now it seems that these things are appearing randomly. Also she was started on augmentin 3 days ago (this is part of the post IVIG protocol) If antibiotics are supposed to be helpful, then why is she still having these weird symptoms? I assumed that even if it was still too early for the IVIG to completely work on turning things around for her (I've heard it takes weeks sometimes) then, at least I thought the antibiotics would definitely do the trick right away. Any thoughts? Link to comment Share on other sites More sharing options...
peglem Posted October 10, 2008 Report Share Posted October 10, 2008 The first thing that comes to my mind is that she may be having yeast issues. Link to comment Share on other sites More sharing options...
Pudgeo Posted October 10, 2008 Report Share Posted October 10, 2008 In my opinion it is good she showed some improvement...but she may need more than one IVIG to correct her immune system. Her "bad" antibodies are not yet fully corrected by the new antibodies. The antibiotic may help, give it more time and you may need another IVIG. My son has shown very slow improvement..he's had 3 IVIG and a month of azith, his concentration is much better and he actually plays sometimes like he used to but we are far from over this..he still has OCD & anxiety so I know I am not done with treatment at this point...Sarah Link to comment Share on other sites More sharing options...
bmom Posted October 10, 2008 Report Share Posted October 10, 2008 It really does sound like the "turning back the pages" that Dr. K discusses. He told me it can go back to old behaviors that haven't been seen in awhile and only lasts a short time. I could be wrong though. Have you emailed Dr. K? He usually responds to my email within an hour or so. I am glad to hear the other behaviors seemed to have stopped. (I am the one who spoke with you on the phone the other day). Please keep us updated and I hope this other stuff also goes quickly. Link to comment Share on other sites More sharing options...
pmoreno Posted October 10, 2008 Author Report Share Posted October 10, 2008 In my opinion it is good she showed some improvement...but she may need more than one IVIG to correct her immune system. Her "bad" antibodies are not yet fully corrected by the new antibodies. The antibiotic may help, give it more time and you may need another IVIG. My son has shown very slow improvement..he's had 3 IVIG and a month of azith, his concentration is much better and he actually plays sometimes like he used to but we are far from over this..he still has OCD & anxiety so I know I am not done with treatment at this point...Sarah When you say that your son had 3 IVIG tx, does that mean that he had 3 separate treatments of 2-day infusions, or just 3 infusions totally? and also I was wondering about the dose that he got each time. What my daughter got was 1 1/2 g/kg of body weight. Thanks.. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted October 10, 2008 Author Report Share Posted October 10, 2008 It really does sound like the "turning back the pages" that Dr. K discusses. He told me it can go back to old behaviors that haven't been seen in awhile and only lasts a short time. I could be wrong though. Have you emailed Dr. K? He usually responds to my email within an hour or so. I am glad to hear the other behaviors seemed to have stopped. (I am the one who spoke with you on the phone the other day). Please keep us updated and I hope this other stuff also goes quickly. I sure hope it's just that - the"turning back the pages" - I am really curious how that actually works or why it does. I mean - what could bring back behaviors or even actual conversations that she had a year ago? I'd like to know the physiological rationale. I will be e-mailing Dr. K tommorrow since it will be time for our weekly update which he requests after the procedure. I think I mentioned that she slept really well for a few nights, then had a horrible couple of hours of nightmares & night terrors the night before last. Last night was great again. It's hard to not know what to expect from day to day or sometimes from hour to hour - things change so unpredictably. Thanks again for all the support. Pat Link to comment Share on other sites More sharing options...
pmoreno Posted October 10, 2008 Author Report Share Posted October 10, 2008 The first thing that comes to my mind is that she may be having yeast issues. I don't think its yeast because she just started the antibiotics 3 days ago and has not been on any for many months. Also I immediately started her on live cultured yogurt & other probiotics. They say that the probiotics you use should be the refrigerated kind - anything else is not as effective. Thanks for your thoughts. Link to comment Share on other sites More sharing options...
lss Posted October 10, 2008 Report Share Posted October 10, 2008 In my opinion it is good she showed some improvement...but she may need more than one IVIG to correct her immune system. Her "bad" antibodies are not yet fully corrected by the new antibodies. The antibiotic may help, give it more time and you may need another IVIG. My son has shown very slow improvement..he's had 3 IVIG and a month of azith, his concentration is much better and he actually plays sometimes like he used to but we are far from over this..he still has OCD & anxiety so I know I am not done with treatment at this point...Sarah Sarah, I am thinking of doing IVIG for my son. You say your son 3 IVIG, where was this done, was it with Dr. K in Chicago or is there another doctor who is doing this as well? Thanks, Linda Link to comment Share on other sites More sharing options...
lss Posted October 10, 2008 Report Share Posted October 10, 2008 It really does sound like the "turning back the pages" that Dr. K discusses. He told me it can go back to old behaviors that haven't been seen in awhile and only lasts a short time. I could be wrong though. Have you emailed Dr. K? He usually responds to my email within an hour or so. I am glad to hear the other behaviors seemed to have stopped. (I am the one who spoke with you on the phone the other day). Please keep us updated and I hope this other stuff also goes quickly. I sure hope it's just that - the"turning back the pages" - I am really curious how that actually works or why it does. I mean - what could bring back behaviors or even actual conversations that she had a year ago? I'd like to know the physiological rationale. I will be e-mailing Dr. K tommorrow since it will be time for our weekly update which he requests after the procedure. I think I mentioned that she slept really well for a few nights, then had a horrible couple of hours of nightmares & night terrors the night before last. Last night was great again. It's hard to not know what to expect from day to day or sometimes from hour to hour - things change so unpredictably. Thanks again for all the support. Pat Hi Pat, We spoke on the phone yesterday, and you were very informative. Hang in there, I'm sure things will get better. My prayers are with you. Linda Link to comment Share on other sites More sharing options...
amy s Posted October 10, 2008 Report Share Posted October 10, 2008 (((hugs)))) You must be nervous. My thoughts are with you guys. Keep us posted. Link to comment Share on other sites More sharing options...
bmom Posted October 10, 2008 Report Share Posted October 10, 2008 Although I still think it is "the turning back of pages", I had one other thought. Some PANDAS parents have trouble with probiotics that contain the strep strain. Perhaps look at what bacteria it has in it and see if strep something is in it. I know that Dr. K has experienced this before though and perhaps it is a good sign that nerves are repairing old damage. I dont think the antibiotic would combat this reaction. Link to comment Share on other sites More sharing options...
Betty04 Posted October 10, 2008 Report Share Posted October 10, 2008 Although I still think it is "the turning back of pages", I had one other thought. Some PANDAS parents have trouble with probiotics that contain the strep strain. Perhaps look at what bacteria it has in it and see if strep something is in it. I know that Dr. K has experienced this before though and perhaps it is a good sign that nerves are repairing old damage. I dont think the antibiotic would combat this reaction. Wow I never would have thought about strep in his probiotics, but it is there (Therbiotic complete)! I don't know if it makes him worse, but there are plenty to switch to without strep so I think I will! Link to comment Share on other sites More sharing options...
ratlenhum Posted October 10, 2008 Report Share Posted October 10, 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 Link to comment Share on other sites More sharing options...
Worried_Dad Posted October 10, 2008 Report Share Posted October 10, 2008 BTW, I noticed that Dr. K uses Gamunex, and he seems to have a very high success rate. Hope it works well for you, Kerrie! 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 Link to comment Share on other sites More sharing options...
Pudgeo Posted October 10, 2008 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 Link to comment Share on other sites More sharing options...
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