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IVIG this week

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Hello! I just got off the phone with what I thought would be a last ditch effort to get things approved. (I misunderstood a lot when it came to the insurance process. Grrr.) ANYWAY...when I called the insurance company to double check the process, they said it was approved & gave me the approval codes. I repeated it back a few times to be sure of the approvals (procedure & med) & YES INDEEDY. (Pssst...ins co. starts with an H. I'm too leery to put too much on the forum in case they call back & revoke approval. But YAHOO!)


I woke up this morning with a start (after only about 3 hours of sleep) wondering about what are we doing. I'm taking my ds(6) 7+ hours away to have IVIG in a few days. It's a procedure that should/could/might/maybe work. No guarantee. And no timeframe to know when. We don't even know how/why it works (just theory). And we saw abx seemingly fail, so we didn't even go that route. Steroids worked some (he was sleeping at night and not raging and we could go out a little bit), but we only did the pred because things were SO BAD and we needed a bit of relief...hoped for a lot & got a little. We've basically been in the throes of exacerbation since Dec when his first dx'd case of strep made the 2nd part of kindergarten awful. Summer was better (not 100%...maybe 60% or 70%) then he got sick again & dx'd strep in mid-Sept after presenting with mental symptoms (no sore throat, no fever). Couldn't get local docs to see PANDAS, and we got in touch with Dr. K. Dx was on 10/13 & that seems so long ago, but it's only been a month. A month! (I do suspect early onset & that PANDAS has been with us for a while but not in the monster form it is in now.) I didn't sob as much after I got the dx, but it doesn't really make any of it any easier. The past few days have been okay (hope I'm not jinxing it because this upcoming trip will be much easier if things are more okay than if they're not). That's why I am wondering...what are we doing. I have to remind myself how bad it can be and how sad it all is...or my son will remind me when he flies off the handle at something insignificant. :( And that even tho' things seem a bit better, that it's better compared to terrible, which is a low bar of progress. I read the success stories and hope that I get to write one. I read the not-successful-yet stories and feel for those parents/kids and hope that healing comes soon. I'm weepy now as I write this. And I've always been proud of my ability to be objective and strong and calm in a storm. I'll admit it...PANDAS beat me. I'm so fragile now that it doesn't take much to get me started. And I'm so mad because this is a condition that makes sense. If you have RF & SC & all the other crappy things strep can do, then why not PANDAS? Why did it have to get so controversial? And why do we have to fight so hard for treatment? THESE ARE OUR CHILDREN! And I feel for the undx'd families out there...and I hope that they find answers soon & that the PANDAS controversy goes away for all of us. (Fingers crossed that the elusive white paper brings great things.) Those not going thru this just cannot understand that it affects everything in our lives. EVERYTHING!


I would like to thank everyone here. Those who have shared the ups and downs of PANDAS. I wish I was the only one going thru this, but I recognize that it's the company of parents (and kids!) like you that have helped me get thru the days/nights & helped me understand so much more about PANDAS. And I am so very thankful for the doctors who do so much work for our kids. The ones that will call it PANDAS and give our families help. I'm not even sure how many blessings I will need to count next week on Thanksgiving, but please know that I will be thinking of everyone on this forum, the doctors, the researchers...and all our precious babies. THANK YOU SO MUCH!

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Congrats on the coverage. Just wanted to let you know that IVIG has been the best thing we could have ever done for our daughter. I was scared too but it has truly been miraculous. Still has a bit of healing to do, but we are miles away from where she was before the first IVIG treatment.


Bit of advice. Benedryl and prednisone can prevent serious headaches. STaying on antibiotics is important.

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Wow, I understand how you feel. You've worked so hard, fought so hard to get help and treatment for your child, but you know there is no guarentee that IVIG will work...with so much invested, you still feel like you're rolling the dice. But, if you don't give it a try, you'll never know and then be stuck feeling like you haven't done enough. Praying that IVIG is the answer for your child...

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