JenniferG Posted December 8, 2012 Report Share Posted December 8, 2012 (edited) Meg had IVIG last Tues/Wed. thurs she was GREAT...playing alone upstairs....this is HUGE. Had hardly any side effects...a slight headache one day. All of a sudden her anxiety has sky rocketed. Today she said she felt weird zaps in her chest and head. She is freaking out. Dr. B gave me low dose Amoxicillin to try (because of C Diff history). Then she a 3 min bout of a quarter sized read itchy spot in the center of her chest. And she she's spots. We have tried Olive Leaf Extract, Enhansa, A Bio, homeopathy, naturals..... list goes on. I feel like nothing is helping..or for that matter making her worse. Can someone chime in on some doses and regimens and spacing? Maybe I am overloading her and she is herxing? Not sure, but she is getting really depressed also Thank you Edited December 8, 2012 by JenniferG Link to comment Share on other sites More sharing options...
nicklemama Posted December 8, 2012 Report Share Posted December 8, 2012 My DS is 8 days post IVIG #2. His anxiety has increased. He's having tantrums in the evenings. He's sitting upside down in chairs. He's having nightmares. We've been down this road before and its par for the course. Dr K calls it turning back the pages. I can't help you w/ meds. DS has been on abx for two years and we haven't had problems w/ abx (knock on wood). Link to comment Share on other sites More sharing options...
hugs2day Posted December 10, 2012 Report Share Posted December 10, 2012 All I can suggest is try treatment dose of Penn VK or Augmentin and have Flagyl on board to cover for the cdiff. it helps my son. Maybe diflucan too it sounds like a lot but each one has its place in treating a flare. I'm sorry your daughter is going thru this I hope it passess soon. Meg had IVIG last Tues/Wed. thurs she was GREAT...playing alone upstairs....this is HUGE. Had hardly any side effects...a slight headache one day. All of a sudden her anxiety has sky rocketed. Today she said she felt weird zaps in her chest and head. She is freaking out. Dr. B gave me low dose Amoxicillin to try (because of C Diff history). Then she a 3 min bout of a quarter sized read itchy spot in the center of her chest. And she she's spots. We have tried Olive Leaf Extract, Enhansa, A Bio, homeopathy, naturals..... list goes on. I feel like nothing is helping..or for that matter making her worse. Can someone chime in on some doses and regimens and spacing? Maybe I am overloading her and she is herxing? Not sure, but she is getting really depressed also Thank you Link to comment Share on other sites More sharing options...
pandakid11 Posted December 11, 2012 Report Share Posted December 11, 2012 HI It seems like for every positive IVIG story, there are tons of bad ones. I don't think IVIG is the answer. Hang in there. Melatonin helps at night, also benadryl. This PANDAS is really rough stuff. Link to comment Share on other sites More sharing options...
sosudden Posted December 19, 2012 Report Share Posted December 19, 2012 JenniferG, Hang in there!! It is so hard to not be able to fix our kids problems quickly!! Our 10 year old daughter had ivig almost 1year ago, Feb 2012. It brought her back. She was pretty much nonfunctioning, a shell of a person, gone... Once again, because this is autoimmune, time and the right treatment, is a bit different for every child. I can share, the 1stday day after ivig, my dd had one severe panic attack, worst she ever had. But, that being said, she was also more "present" and aware for the 1st time in months and didn't "disappear" like in the past. Also, shortly after ivig, I could see her big brown eyes again!!! I knew her pupils had been dilated but sheeesh - forgot her eyes were brown until after ivig. Have you noticed a difference in her pupils yet? The zapping pain --- my daughter developed this about 3-4 months after ivig -- chest, arms, legs. We uncovered and treated coinfections, myco and viruses, and chest zapping slowly subsided. Dr also said could be B12 is low, tried supplementing that and dd could not tolerate (made her amped up and antsy). Saw local neuro for zapping in arms and legs -- verdict was it was also related to post infextious autoimmune response -- a neuropathy that should go away over time (although and it has). In June my dd was diagnosed with auonomic dysfunction or POTS -- also post-infectious autoimmune. So, long story not very short (LOL) time time time after ivig. Turning back the pages is frustratingly true at least for us. BUT, 10 months out and dd is 90-95%. OCD lingers and we are in intensive therapy -- no WAY we could have done it any sooner than we did -- but she is in school and smiling and interacting and laughing!! One year ago exactly I was shell shocked - this was before I discovered PANDAS/PANS. I think back and my stomach just drops -- my thoughts were so dark seeing my daughter decompensate so quickly, her future disappearing before our eyes... So hang in there!!! Deep breath! Keep researching. And remember TIME will help heal your little one!! Link to comment Share on other sites More sharing options...
Dedee Posted December 19, 2012 Report Share Posted December 19, 2012 I agree that time is what it is going to take. We all wish they were better immediately after the IVIG, and for some it does work that way. For us it was a slow gradual effect. It was worse before better. We used benadryl and motrin to get through the hard times. Hang on and know that good things are coming your way. My only other suggestion is to make sure you are on the right antibiotic. A couple of months after the IVIG we switched my daughters antibiotics (her myco p titers still positive)and that also brought some improvement. Also tested for MTHFR gene and are treating that which increased healing as well. At the one year post IVIG mark, when I reflected back I had to admit that although we still weren't 100%, we were MUCH better than before the IVIG. Hang in there....... Dedee Link to comment Share on other sites More sharing options...
JenniferG Posted December 20, 2012 Author Report Share Posted December 20, 2012 I agree that time is what it is going to take. We all wish they were better immediately after the IVIG, and for some it does work that way. For us it was a slow gradual effect. It was worse before better. We used benadryl and motrin to get through the hard times. Hang on and know that good things are coming your way. My only other suggestion is to make sure you are on the right antibiotic. A couple of months after the IVIG we switched my daughters antibiotics (her myco p titers still positive)and that also brought some improvement. Also tested for MTHFR gene and are treating that which increased healing as well. At the one year post IVIG mark, when I reflected back I had to admit that although we still weren't 100%, we were MUCH better than before the IVIG. Hang in there....... Dedee How are you treating the gene mutation? Link to comment Share on other sites More sharing options...
Dedee Posted December 20, 2012 Report Share Posted December 20, 2012 My daughter was positive for C677t and so we switched vitamins to those with the methylated B vitamins and also suplement with L-5 methylfolate. Also we found KPU and so she gets zinc and P5P. There are several families on this board with these issues. Treating it does seem to bring some healing. Dedee Link to comment Share on other sites More sharing options...
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