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).

I am so glad to hear your DS is doing so well! What great news!

1tiredmama -- PM'd you regarding NALC insurance

As of a few months ago the infusion company was MedPro. They take some insurance, but my insurance company does not have them as a preferred provider, so they don't take mine. . MedPro was very good about contacting my insurance company, getting back to me with thorough information, and letting me know the cost up front.

While I agree that the psych can't be too nice, our experience was that our DS could only make progress with a psych that he liked. When all of this first started with DS, he was in really bad shape (in a full PANDAS exacerbation with anxiety, intrusive thoughts, meltdowns, inflexibility, suicidal, etc) We were traumatized and very, very worried, and found a psychologist for him to see (initial diagnosis ODD and mood disorder -- likely bipolar). DS took an immediate, intense dislike to the therapist, told us so, but we insisted that the therapy was essential. DS refused to go many times, locking himself in his room, havng total meltdowns at the idea of seeing this therapist, saying he hated the Dr. and wouldn't go, etc. We tried to stick with that therapist for months, even though DS vehemently disliked him and objected, eventually attacking DH everytime he needed to take DS to the therapy appt. It was only after 5 months of this that I finally figured out that he might have PANDAS, we got that diagnosis from Dr. B (and eventually Dr L) and started antibiotics which made an immediate difference in his mental state. At about the same time that we started the PANDAS treatment DS switched to a different therapist (really out of desperation on our part. DS refused to go see the first therapist, and clearly was in a deep psychological crisis) Maybe it's because the antibiotics caused a rapid and notable improvement and made DS psychologically available for therapy, or maybe it's because the current psychologist is truly skilled, but DS has mostly done well with his current therapist. I do wonder at times if the current therapist is too nice, but the bottom line is that DS is actually willing to go see him, likes him, and benefits from the visits, and the psychologist is still working really hard to build a rapport with DS. DS couldn't benefit from the appointment with the therapist that he really disliked. I feel like, in hindsight, we stuck it out too long with the first therapist, but this was all so new to us, and our first experience with a child in this condition.

There is an Ohio group of pandas parents that I bet can guide you, but do you qualify for the PANDAS clinical trial at NIH? It's definitely worth looking into.

Try two M&M's before the medicine, then give her two more immediately afterwards. Our ped suggested it when my DS had to take a very bitter antibiotic (Ceftin, I think) when he was 4, and it worked.

I'm so sorry. Insurance companies are so clueless. Keep fighting and get an advocate if you can. IVIG is less expensive if you can't get them to approve PEX,...but I know Cigna generally won't pay for that either. Any idea if your ds has any immune deficiencies? Dr. B can sometimes get ivig approved through that route, although I know dr l recommended PEX for your ds. Keep fighting for your son.

I can so relate. After a February diagnosis and 6 months of abx treatment (6 months on Augmentin and 2 months of Zithro) my son the best he's been since last summer. He also had a 'pretend' meltdown this week, and then when we started to get really worried about his reaction to a minor thing, he took great joy in saying "gotcha" to us and laughing joyfully. I'm so glad that our kids are improving.

We had to go out of network in the DC area. DS's therapist charges $150 for a 45 minute session. When all is said and done, insurance pays $78.75 of that charge, leaving us with $71.25 of the expense. (The insurance's allowed amount is $112.50, and they pay 70% of the allowed amount, leaving us with the rest.)

We have an August 13th appt, too. Must be latitudes day at Dr. B's office . We're hoping to move on to IVIG soon after 6 months on antibiotics. DS has improved a lot, but we're still hoping to get closer to 100%.

The charge for a 70 pound child (30 kg) at our local PANDAS docs office was quoted at 13k. Insurance definitely wouldn't pay because it was out of network. We're trying to find less expensive options, so we're also interested in the responses here.

Thanks for posting this! The bulk of the PANDAS discussion is in part 4, but the whole presentation is informative.

Fascinating. So many things seem to have an immune component. Thanks for posting this.

I think Kiera used ID to mean Infectious Disease. There are still few PANDAS knowledgable docs across the country. I agree that you should see an immunologist. I'd suggest either Dr. B in CT (first choice) or go to USF for a full work-up, hopefully to include seeing someone at the immunology department there. Which state are you located in?

What great news! Congratulations! Hope your whole family is feeling better soon!

So glad he did so well! Hope the appointment today is productive and the trip home much smoother!

I'm speculating here, which is always dangerous, but wouldn't the concern be related to the fact that it would be low-dose? My understanding is that lower dose IG is not anti-inflammatory in the brain and can actually increase brain inflammation, which is why high-dose, rather than low-dose IVIG is done for PANDAS.

We'll be there Monday too, for a mid-day appointment . As bigmighty said, he typically runs at least an hour behind. Even the time we had a 9 AM appointment he was already running that late. Bring things to keep yourselves entertained while you wait. We drive up the day before and then head back home right after the appointment. Monday will be a long day for us!