DeterminedMomVA

How low? 200's or 600's? serum IGG normal range from quest is 820 - 1800, I think My impression is that many immunologists won't formally diagnose hypogammaglobulanemia unless the IGG's are more like 200 than 600. However, serum IGG around 600, no immunity to Hib or 13/14 types of strep pneumonia, plus recurrent infections was enough for us to get insurance coverage for IVIG thru dr b and an immune deficiency diagnosis.(even though our ped. is not too concerned about serum igg of 600 plus low igg1)

Hi DCmom, In DS's case it appears to be intense social anxiety and fear of failure at what he attempts (perfectionism...although his handwriting can be very sloppy (again, deteriorates noticeably with each exacerbation or when upset or tired), his room is messy, etc., but it's like an internal expectation of perfectionism.) No one has been able to identify the actual OCD fear and he hasn't told anyone what it is if he has it. Thanks for the insight you provided, maybe we need to push harder to see if we can pin down a specific fear. His first therapist said 'no OCD', just mania (he was moving toward a bipolar/mood disorder dx)...DS didn't like first therapist at all, so we switched to one that we think is great. Current therapist says he doesn't meet the dx criteria for mania, he's just 'wound up' sometimes in an ADHD type way, but again, no id. of an actual OCD fear. When he's in an exacerbation he has lots of intrusive and scary thoughts and becomes hyperfocused on a particular thing or activity for hours at a time, before dropping that and moving to something else. Interestingly, when we saw Dr. L (about 2 months after we'd seen Dr. B and started augmentin, which resulted in a rapid and notable improvement), DS took the self-reported Childhood Yale-Brown OCD scale and accidently filled it in for how he'd been feeling before abx -- he scored a 27. Then Dr. L asked him to fill it in for how he was doing on that particular day, and he scored a 6 (he was doing pretty well after a few months on abx.) He's not on any SSRI's right now, but things are getting to the point where we might need to try one again (Zoloft wasn't successful last year). His allergies started bothering him again last week, and Zyrtec, which we restarted last week was definitely activating him, so the ped just prescribed Vistaril at my suggestion (thanks to the board for telling me about it)...I'm hoping it will also help with anxiety without sedating him--he takes Nasonex too, but apparently it's not enough this time of year. His first IVIG is in a month, and we're hoping not to make any more med changes until well after that so we can disentangle the effect of IVIG from the effect of any med. Our hopes are pinned on it, hopefully it will help -- like 1tiredmama, things are getting rough again right now. So grateful we have this board with others who understand how rough things can get and provide hope.

I'm thinking of you, too, and pulling for you. This is really stressful on family relationships...hang in there and try to be good to each other while you fight this. My DS also has school anxiety. He wakes up about 2 mornings each week refusing to go due to some anxiety (social, academic, etc.), often little things that's he's hyperfocused on and blown up into a big thing. As with all anxiety, we've found it very important to keep making him go to school. We do everything we can to make him keep facing the anxiety and learn to calm himself and get where he needs to go, rather than accommodating the anxiety. Today he was almost 2 hours late, but he got there. Having said that, we've also been fighting my DS's anxiety over sports, even the sport he loves, ever since he developed PANS. This year we finally allowed him to withdraw from that sport...the constant fights and anxiety over going to it was just too much, and we need to focus on getting him to school, which we think is more important. We hope that with IVIG he'll improve and his anxiety will go down,but who knows. I'm lucky to have a fairly understanding workplace where I've been for a long time, and have FMLA that I can use as needed for the next year. I tend to use it for a few hours here and there when DS can't get himself to school or needs to see the Dr. I don't know how I would be able to cope with having a PANS child if I had a new job and an employer who didn't know my history of being reliable and competent before my DS fell apart. Hang in there....

Were you trying to get the Igenex or Quest lyme test?

Hi Iowadawn, Hang in there and keep doing what's best for your family and child. This is such a difficult disorder that causes so much suffering for the child and family. I hope this placement is effective and helpful for your child. It's so hard to make decisions with so little support and understanding (and sometimes hindrance) from the system. You're doing a great job...just keeping moving forward. Hugs.

Missmom, Please don't bring politics into it. There will be no government bureaucrats involved in the way the rhetoric apparently has you believing. The insurance company bureaucrats are the problem being discussed at the moment. Keep in mind that NIMH is a government agency and all of the clinical studies that have been done on PANS/PANDAS have been government-funded by government researchers. Insurance companies will be under much more pressure to cover IVIG for PANDAS if this second NIMH study also shows that IVIG is effective and is published in a peer-reviewed journal. I'm far more worried about making sure the NIMH continues to be funded well enough to keep doing PANS/PANDAS research. (Paul Ryan is no friend of the NIH -- Cuts to NIH funding) Let's keep the thread and board on point and discuss PANS/PANDAS and our kids' struggle with it, and not throw out inflammatory political opinions --it's a sure way to destroy the welcoming and helpful tone of this board. Thanks.

Also, augmentin isn't effective against mycoplasma. My ds has avoided strep while on augmentin, but did get myco. He needed zithromax for the myco. Sounds like those could be symptoms of myco (the cough and all).