peglem Posted April 20, 2010 Report Share Posted April 20, 2010 Low dose IVIG is making things worse. We had my daughter in a relatively good place January through most of March. Agression, rages, SIBs were nearly absent...all her SIB wounds were healing, she was starting to work on her lessons at school....everything moving along nicely. March 24th we started low dose IVIG, standard dosage for immune deficiency, to be repeated every 3 weeks. Things got just a little worse, but improved again after 2 weeks. She had her 2nd infusion a week ago and has been going downhill ever since. I know you guys told me, and I should have listened...but she has an immune deficiency and so I thought correcting that may be the right thing to do. So yesterday I went surfing, and found LD IVIG increases inflammation...and that's what I'm seeing- huge pupils, photophobia. High dose IVIG decreases inflammation because of the higher amount of sialic acid. So, have a call in to her pediatrician to see if he'll rx some prednisone. Her immunologist has nothing available until June frickin 1st! But, I've got an appointment for monday with his brother who is an immunologist also, same practice. This is scary- it was a long haul getting her to where she was b4 IVIG. Link to comment Share on other sites More sharing options...
EAMom Posted April 20, 2010 Report Share Posted April 20, 2010 I know you guys told me, and I should have listened...but she has an immune deficiency and so I thought correcting that may be the right thing to do. So yesterday I went surfing, and found LD IVIG increases inflammation...and that's what I'm seeing- huge pupils, photophobia. High dose IVIG decreases inflammation because of the higher amount of sialic acid. Wow...interesting. I would have though low dose would have not been that helpful...I didn't realize it would make things worse! Link to comment Share on other sites More sharing options...
ShaesMom Posted April 20, 2010 Report Share Posted April 20, 2010 Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam Link to comment Share on other sites More sharing options...
bubbasmom Posted April 20, 2010 Report Share Posted April 20, 2010 My son does not have immune issues, however he definitely takes a turn for the worst following IVIG. I don't know if his is considered low dose or not. However, his IVIG was 3/22 and we are now (the last week or so) beginning to see very good signs. My son too was at a 'fairly' good place prior to the IVIG and then totally slipped back. SOOOO CONFUSING!! Link to comment Share on other sites More sharing options...
peglem Posted April 20, 2010 Author Report Share Posted April 20, 2010 Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?) Link to comment Share on other sites More sharing options...
mom2gsd Posted April 20, 2010 Report Share Posted April 20, 2010 Are you sure your daughter hasn't been exposed to strep again? Link to comment Share on other sites More sharing options...
ShaesMom Posted April 20, 2010 Report Share Posted April 20, 2010 Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?) No worsening of symptoms or setbacks unless she became ill. After each IVIG we saw a decrease in various symptoms (one month it was anxiety; the next month it was eating disorder; etc...) She receives 20 grams every 4 weeks which is about 1 gm/kg. She was pretty severe at her worst. Raging, severe separation anxiety, vocal & motor tics, food issues, sleep issues, joint pain, dilated pupils, about the only thing that she didn't experience was OCD type behavior that involved counting or hoarding. We actually see an increase in fatigue and joint pain the week before her next IVIG but she always improves within 12 hours of the treament. Link to comment Share on other sites More sharing options...
mama2alex Posted April 20, 2010 Report Share Posted April 20, 2010 Sam, I thought your daughter started out with high dose IVIG the first time (2g/kg?), then moved to lower dose monthly? I could be remembering this wrong, but that might be an important difference. Jennifer Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam Link to comment Share on other sites More sharing options...
Fixit Posted April 20, 2010 Report Share Posted April 20, 2010 So yesterday I went surfing, and found LD IVIG increases inflammation do you recall where you saw this? Link to comment Share on other sites More sharing options...
peglem Posted April 20, 2010 Author Report Share Posted April 20, 2010 Are you sure your daughter hasn't been exposed to strep again? That was my 1st thought, and I can't be sure, but this seems to be directly related to the IVIG. After the 1st one, I thought, well, its just a little worse and a little backsliding is expected after IVIG. And things did get better the 3rd week after. But it got a lot worse very quickly the second time. School asked yesterday if we thought the aggression gets worse after IVIG- so not just my observation. Link to comment Share on other sites More sharing options...
sf_mom Posted April 20, 2010 Report Share Posted April 20, 2010 Try upping antibiotic and see if she responds in the next 48 hours to higher dose. It might be temporary fix but I suspect it will help. It did in our case every time we upped the antibiotic and we DID IT ALOT. -Wendy Link to comment Share on other sites More sharing options...
peglem Posted April 20, 2010 Author Report Share Posted April 20, 2010 Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?) No worsening of symptoms or setbacks unless she became ill. After each IVIG we saw a decrease in various symptoms (one month it was anxiety; the next month it was eating disorder; etc...) She receives 20 grams every 4 weeks which is about 1 gm/kg. She was pretty severe at her worst. Raging, severe separation anxiety, vocal & motor tics, food issues, sleep issues, joint pain, dilated pupils, about the only thing that she didn't experience was OCD type behavior that involved counting or hoarding. We actually see an increase in fatigue and joint pain the week before her next IVIG but she always improves within 12 hours of the treament. My daughter is getting less than .5gm/kg. Dr.L recommended 1gm/kg, which I also thought was too low, but its good to hear that has worked for you since I think the chances of getting the immuno to do more than that may be slim! Link to comment Share on other sites More sharing options...
peglem Posted April 20, 2010 Author Report Share Posted April 20, 2010 So yesterday I went surfing, and found LD IVIG increases inflammation do you recall where you saw this? I googled "IVIG inflammation" and also did a pubmed search of the same thing. Many articles made it sound like common knowledge that LD IVIG is pro-inflammatory and paradoxically anti-inflammatory at higher doses. Here is an article that I thought merited saving: http://www.ncbi.nlm.nih.gov/pmc/articles/P...16/?tool=pubmed Also, search for "IVIG sialic acid" for some interesting stuff. Link to comment Share on other sites More sharing options...
ShaesMom Posted April 20, 2010 Report Share Posted April 20, 2010 Sam, I thought your daughter started out with high dose IVIG the first time (2g/kg?), then moved to lower dose monthly? I could be remembering this wrong, but that might be an important difference. Jennifer Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam Yes, she did receive 2 gm/kg over two days the first time. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted April 20, 2010 Report Share Posted April 20, 2010 Peglum -- All I can offer is good thoughts, prayers and wishes that this phase is quickly passed through for you and your daughter. We've not done IVIG, so no experiential thoughts to add here. Take care! Link to comment Share on other sites More sharing options...
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