Hayley

FixIt, we ended up doing the HD in early December (so we're about 3.75 months out). She's doing great. Most of the time, she's 100% her old self with the exception of about a handful of days since early January where she'll have a couple of hours where she is "off" (generally either overwhelmed by anxiety or gets agitated from something and gets super defiant/angry - nothing like the rage we used to see pre-treatment, but not really her norm). It's literally a couple of hours and with the exception of one week when it happened twice in the same week, these episodes seem to be about two weeks apart and relate to times when she is super tired and/or there's lots of illness going around. The possibility of repeating IVIG, either with one more HD or, if her immunoglobulin doesn't hold (it's dropping, but according to our immunologist, not as much as he expected), maybe lower dose more regularly, is still on the table, but for now we're just watching and waiting.

I have no personal experience with this, but there was a podcast episode of "Housecalls with Dr. T" that focused on stuttering. Here's the link: http://www.strepmonster.com/PODCAST.html.

Prior to IVIG, my DD7's IGG level was 394. The paperwork I have from the lab has the range at 572-1474. I don't know if that is age specific or not. I don't think her subclasses were ever tested.

Thanks, Jtsmama, since my last post I have figured that out! For what it's worth, there is a Primary Immuno Deficiency clinic at NIH -- it's a clinic, not a study. They are looking at the big picture for people with all types of PID and of all ages and they work with your doctors to advise on treatment plans. My daughter is currently being seen in the clinic and we have someone from the PANDAS study who consults on the case. So far, they haven't touched the treatment plan recommended by Dr. L because it seems to be working. They are, however, tracking my daughter closely and may advise to repeat the IVIG if she doesn't hold steady over time. The doctors have been wonderful and it will be interesting to see how things pan out. I understand that despite a high incidence of autoimmune disorders among PID clinic patients, my daughter's case is the first PANDAS case referred to the clinic (and the first contact between the PID clinic and the PANDAS study -- the PANDAS study folks say they haven't had immunodeficient kids screened for the study which I thought was surprising). HOWEVER, since my daughter entered the study, I believe another case popped up that the two departments are collaborating on. You have to apply and be accepted in the study and I'm not sure if they are interested or willing to take any other PANDAS kids right now, but if anyone thinks they might be a candidate, there is info on the clinic here: http://www.niaid.nih.gov/topics/immunedeficiency/pidclinic/Pages/Default.aspx. Feel free to pm me if you are interested in more info.

So happy for you and your family! thank you for sharing!!

I think most of my suggestions have been covered already on here. One thing that was really good to get my daughter psyched up for the IVIG...there is a youtube video by a little girl named Sera, three months post-ivig where she talks about it making her better. I had my daughter watch this (though I stopped it before the end where the screen lists a lot of symptoms, some of which my DD doesn't have -- I didn't want her to start fixating on other things that might crop up other than what she already had!). It really gave her confidence in the medicine and gave her the courage to overcome fears about the process and aftermath. Good luck!

IVIG made a dramatic diffeence for my daughter. We're only a little over three months out from doing it so I can't say whether it will work for her long term, but for me it was worth it to get her back (she had gotten much better on abx alone, but the IVIG got her to 100% -- with the exception of a few days where she's off for a couple of hours but bounces back) and I'd do it again in a heartbeat to sustain the progress. One thing I do think is a factor in whether the IVIG needs repeating is immune system function. My daughter has Common Variable Immune Deficiency which, itself is often treated with IVIG. If her body can't jump in and start producing immunoglobulins on its own, she will be very vulnerable to illness and will likely get sick, end up back in a flare and need repeated IVIG. Other more experienced folks may know better, but from what I've gathered, I think a lot of kids with CVID or other immune deficiency issues have this issue and the better protected a child is naturally from infection, the longer gains from IVIG will be sustained.

She did not yet start gymnastics, but continues to ask for it (I'm trying to find a friend who's schedule coordinates with hers so they can do it together), started a hip hop class two weeks ago and just asked to be signed up for an acting class. The anxiety does NOT seem to be around the dance class (and she definitely gets her heartbeat up in the class) which is Tuesday afternoons. Thanks for the suggestion though. I will keep an eye on it.

Thanks all. We did a lot of CBT, used what to do when your brain gets stuck (something she wouldn't even look at until after the IVIG) and she really had overcome all of her "fears" etc. When she's good she is 100% good and there is no opposition, refusal, weird behavior, etc. These little episodes are the exception and are isolated, they resolve within a couple of hours (not tantruming/raging for a couple of hours, but she's overwhelmed with anxiety/"I can't" feekings/negativity for the couple of hours). Last night was the first time there was any rage (and it wasn't anywhere near what she had in the past) and in the prior times where she had a hard time going to school, I found the more I pushed, the more freaked out she got. When I brought her home, let her chill for just a short while (playing in her room or doing school work here), she turned around pretty quickly. This morning she says she's better, but I hear in her voice a little bit of trying too hard that makes me think she's not completely herself. I'm going to call Dr. L this morning and dose with ibuprofin. We just did a strep culture two weeks ago. This girl has NEVER tested positive for strep on a culture so honestly, I feel like I'm beating a dead horse with that one and just torturing her. She had bloodword done last week at NIH including Anti-DNAS so I'm trying to see if that info is back yet too.

yes. treatment dose augmentin.

As I've noted in some encouraging posts to others recently, DD7 has been doing great. She had HD IVIG in early December and the last couple of weeks, I would say she really hit 100% -- with the exception of a couple of very short (and spread out) "blips". Up until today, the bumps in the road since she was REALLY better, were basically two days, about two weeks apart (most recently this monday) where she just was flooded with anxiety on a monday morning (something she's really not struggling with now) and couldn't get to school. Both times, she turned around within a pretty short period and made it into school by mid-morning. Both times within 24 hours she went on to not only turn it around, but do something new and daring that reaffirmed our confidence that she's getting back to her old self (the first time, she rode the school bus, this last time, she resolved to start back at gymnastics class - something she had given up). I wasn't so worried since these days were few and far between and both came after busy weekends where she didn't get all the sleep she should have. However...today, after a great day, I was out for the evening and got a text from my DH saying that DD was having a rage like we haven't seen in months. She was agitated over her homework, said she couldn't do it, wild eyes, spitting, kicking, calling DH names, saying she's never going to school again. I ended up coming home and by the time I was here, she was calm and I got her to talk to me about what was going on (brain fog, feeling worthless, worried about not gettnig her assignment done...crying and just so so sad). She relaxed a bit and was able to calm down and by bedtime said she felt better (she didn't feel "dumb" anymore and was in better spirits, chatting, sweet, etc., talking about a new class she wants me to sign her up for with her friends). Two of these episodes in a week (and this one more than we've seen in months, the others she was just sad and anxious and felt like she "couldn't" get to school), I'm worried. I know from tracking her immunoglobulin levels that the IVIG is leaving her system and her immunity is dropping (both IgG and IgA were below normal last week, though not as low as they had been at their worst). Strep is rampant around here. Five kids were out of her class this week (not sure if it's strep or something else, but I know a close friend from our neghborhood has it and someone in my DS's class. Wee've all been tested by swab with negative results, but my son has a cold and has been complaining his stomach hurts on and off for a couple of weeks which makes me nervous -- considering getting bloodwork done. So my quesitons are: if she's bouncing back from these little blips, does that mean she's not "tanking" as they say? Or should I start pursuing a steriod burst or something to get her through this? How many close together episodes would you consider trouble (prior to today, the last "rage" type tantrum we saw from her was January 23) after a period of doing great? And could this just be her body adjusting to life without all this foreign immunoglobulin around running the show? I know that the period between three and six months can be crucial. Just not sure if what I'm seeing is part of the progression or a regression to where we were. Any experiences for those who have been there would be most appreciated! Thanks!

She is still on antibiotics. She was originally put on azithromycin(three cycles of five days on, five days off)and we saw a small, but noticeable change. The change was most noticeable BECUASE when she cycled into the days off, we would see she was getting worse. When we connected with Dr. T, he added augmentin to the mix so she was taking a dose of azith in the morning and a small dose of augmentin at night. The change was much more noticeable after that change. several weeks later when we started seeing Dr. Latimer, she dropped the azithromycin from my daughter's protocol and increased the augmentin significantly (2x per day with each dose double what she had been getting daily before) and within a couple of days we saw MAJOR improvement. After about three weeks, we felt like she was significantly improved (maybe 75%), but then she got sick with a virus and started regressing. A few weeks after that, we did IVIG and that's where we saw the real improvement. The doctor kept her on full dose of augmentin and plans to keep her on that dose at least through the end of the school year at which point (at best) we'll wean her down to a preventive dose. I think the plan is to keep her on some level of a maintenance dose until she's a teeanger (she's 7.5 now). Right now, we're just taking it step by step....

My DD also tested negative for strep and her titers were low on the original bloodwork (though they went up to just over 200 a month later -- significant enough to sway my ped, but interestingly, our PANDAS doc didn't seem to think it mattered one way or another since her clinical presentation was very clearly (to her) PANDAS/PANS. Her positive response to the abx was further proof to the doctors with experience in this area. When we first started abx and saw some improvement, we had made an appointment for a PANDAS doctor close to us, but were three months out from that. In the interim, realizing that I would never get my ped to prescribe enough antibiotics to hold us until that appointment, we scheduled a phone consult with Dr. T a PANDAS doc in NJ who is wonderful. We had assumed that he would recommend the longer term abx and that based on his recommendation, our ped would do the script, but in the end, he actually just prescribed the meds himself and worked with us until we could get into the specialist who is geographically nearby. Good luck!

Thanks, Landamaom! When DD's pneumococcal strep levels were tested pre IVIG, out of 14, half were below 0.35 (the threshold according to the lab) and five of those were below 0.2. Another five were under 1.0 (only two were 1.0 or over). I did have another immunologist say he didn't think that was so bad, but the NIH folks seem to think it's pretty awful. Post IVIG, she is showing immunity, but that is, evidently, based on the influence of the immunoglobulin she got as part of the IVIG.

Good luck! I hope you got the IVIG this go round and don't have to wait! I'm not sure if there are any side effects associated with the placebo, but when my daughter had IVIG,we definitely ahd some nausea the first couple of days (she threw up the morning after the second dose -- just once) and she was a bit wired -- difficulty falling asleep for at least a week. I felt that within the first couple of weeks (days even), we had glimpses of the old her, but then also episodes of real PANDAS stuff and, with progress even, some very deep sadness (I attributed this to her coming out of the fog in some ways and then realizing herself how really bad she was and coming to terms with it). Between two and three weeks she really started to stabilize and from there on, the things that had been challenges for her started slipping away one by one pretty quickly. By six weeks things were very stable, she had shed most of her PANDAS behaviors, but we still had "bad days" about once a week and a couple of things she couldn't overcome. We're now 13 weeks out. I would say about a week ago we really felt like we hit 100% with her. We are still watching her like a hawk and are nervous, but are trying to enjoy having our girl back, at least for the time being! Good luck! I, too, have herad that the study has been very successful and my family certainly attributes my DD's progresst to he IVIG. I hope that it is successful for your child as well!

Thanks for the responses. Were your kids diagnosed with CVID as well?

In searching the archives, I see that the consensus is NOT to redo Pneumoccocal vaccines in cases where children's bloodwork shows they are not holding the immunity because of the risks involved and fear of kids going off the deep end. I have heard stories of kids who have negative reactions, but have also heard some do ok. We are getting a lot of pressure from our immunologist to revaccinate to see if my daughter might hold the vaccine this time. She has been diagnosed with common variable immune deficiency (IgG 394 and IgA 12, then up to 24, prior to IVIG). After IVIG in December, the levels went up of course. However, over the past couple of months, they are starting to drop again so we are watching and waiting. I'm not rushing into anything right now (she's currently stable and we are trying to just enjoy this while it lasts, don't want to rock the boat!), but I admit I'm a little nervous about her not being protected without these vaccines (in part becuase the immunologist and even a doc from the NIH PANDAS study are freaking me out!), but are not ruling out doing it at some point. That said, there's no telling if she would hold the vaccine even if we did it. Is there anyone out there who DID redo the pneumoccocal vaccine? If so: 1) was your child stable when you did it? 2) did s/he hold the immunity after revaccinating? 3) was there an adverse reaction? And if so, did s/he recover and how/how quickly. Finally, does anyone understand why there is a negative response in some kids? I was told the vaccine is not live and is comprised of sugars so I don't really understand how or why. Not that it matters, but I'd love to make sense of this! Thanks for sharing any relevant experiences or insight!

My DD7 had IVIG at the beginning of December and she is, with a few small blips here and there, back to her old self. I would say it's been about a month now that she is really back to baseline most days. We've definitly had days when she is "off" but they seem to pass pretty quickly and thank goodness have been few an far between (insert aggressive knocking of wood here!). She was not at her worst going into the IVIG, but deinitely had major challenges at that point. We started seeing gimpses of the real her (more present, eyes looked like our girl, short fuse began to disappear) within the first couple of weeks after IVIG, but she was still really struggling trying to overcome her OCD, anxiety, sensory stuff, etc. Similar to your comment about your son breaking down and crying, for several weeks post IVIG, we found that we would try to push her or she would try to push herself, and the experience of trying to and failing to overcome the urges was really hard on her. She would get EXTREMELY sad and cry for hours. As the weeks passed, she started to become amazingly articulate (for her age) about how very hard things were for her. I think she was starting to come out of the fog and coming to terms with how stuck she was. This DID PASS and little by little, her PANDAS behaviors have dropped off. Try to hang in there. It takes time. As for whether this is a cure, even as good as my DD is right now, I worry daily that we might have a set back and watch her like a hawk. I guess only time will tell. But whatever happens, I feel comfort in knowing that we were able to get back to baseline with the IVIG and I would do it again if necessary.

Here's the NIH study info: http://clinicaltrials.gov/ct2/show/NCT01281969

All three of my kids had tonsillectomies NOT related to PANDAS (though for my daughter who has it, we think onset was about the time her tonsils blew up to the size of baseballs..no surprise there!) and our ENT prescribed abx each time for 10 days prior. I don't recall if they got them after, but i believe they did during the surgery. All were on omnicef. I thought this was standard procedure.

Good friends of ours just did a T&A several weeks ago on their DS7 with PANDAS and saw a MAJOR improvement pretty quickly. Certainly not 100% (they actually did IVIG this week to get him the rest of the way there), but signficant gains. No strep showed up in the tonsils, but lots of other infection. Their son did not have a history of tonsillitis or other indications that would have suggested the T&A prior to the procedure. The ENT they used said that he has had a number of kids referred to him for T&A based on PANDAS and in every case, when he takes them out and cultures them, they are a mess! That said, my DD had her's out several years ago, long before tha dramatic change in behavior we recognized as PANDAS, so obviously the T&A is not a cure all for everyone. If my DD did still have them, though, I'd be inclined to take them out now.

They are a very organized group with 501c3 status pending and expected soon. They do have a (very impressive) Scientific Advisory Board as well: http://pandasnetwork.org/2010/12/scientific-advisory-board-members/

After my daughter's IVIG, we had some similar stuff within the first several weeks. I remember calling our doctors and saying that she was "just so sad." She would be great, but then experience an emotional dip and cry for extended periods of time and say that nobody understood, things were so hard. She was especially vocal about school being very very difficult. She had not been as articulate about the pain and frustration of it all earlier so we weren't sure if this was new or if it was that she was making some progress (we were seeing more glimpses of the "old her" which made the dips even more dramatic) and, with that, coming to terms with just how off she had been. I can't speak to coinfections, but it sounds like there's a lot of good advice that's worth pursuing in case there is something complicating his recovery. I will say, though, that my dd turned a corner around week four and, with some bumps in the road, she has made tremendous progress. We are now 8 weks out and haven't had the sadness in several weeks. She has also reported less "brain fog" in the past two weeks. I read Brain on Fire as well and was struck by the author's comment that even when she seemed ok to others, she didn't feel 100% herself (not as sharp or witty) for many months. I think it really is a process! Sorry your family is going through this bumpy point. I hope progress is right around the corner for you!!

PANDAS Network is run by Diana Pohlman and a small group of other VERY dedicated parent volunteers. Doctors at the frontline (including most of the top docs cited frequently on this forum) are working with the PANDAS Network's leaders providing advice and guidance on an ongoing basis. My experience with PANDAS Network and the folks who operate it is that they are doing their best, with limited financial resources, to support families and advance understanding and treatment of PANS in the broader medical community. This is no easy task with all the skepticism out there and they are -- very smartly -- drawing lines to keep the message simple and straightforward and to avoid the pitfalls of any unnecessary murkiness that could impede any effort to gain acceptance of PANDAS and the treatments that are working for our kids. This is absolutely necessary if we are to get to a point where the masses of pediatricians, educators, parents, insurance companies etc. accept PANDAS as a real and actual thing that CAN be treated. The organization is completely volunteer-run by parents who have taken on this tremendous challenge. Re: the recommended doctors list, the Network decided they had to have some criteria for inclusion and decided, as has been discussed here, to use the NIMH's recommended protocol for IVIG as that criteria. While awareness and parent support overall are central to their mission, they are also taking on the very difficult task of advocating for treatment and coverage options for PANDAS families that include IVIG. Whether you agree or not with the criteria they set, you have to respect their right to draw a line for logistical and legal reasons if nothing else. I don't know Dr. B, and have not had my child treated by him -- not because I think there is anything wrong with him, but because we happen to have another PANDAS doctor and immunologist here in our back yard who we found first. I'm thrilled for all of those families who have been helped by Dr. B. Clearly what he's doing is working for some children and I don't think anybody is trying to dismiss that. His approach to IVIG, by all accounts I've heard at least, does differ somewhat from that which most of the other big PANDAS docs are using. As such, it does not seem surprising that he might be an outlier from a list of doctors who are more conservatively adhering to the closest thing we have to a standard in this field right now. Given how complex all PANDAS cases are, of course, this is an area where a "standard" isn't exactly practical. But if we're trying to gain acceptance (and insurance coverage) so that our kids can get the treatment they need, I would argue that as a "movement" of sorts, the PANDAS community can benefit from creating some parameters in our messaging so that the general public can wrap their heads around our case. We as parents aren't held to such parameters in seeking solutions for our kids and neither are the doctors in their individual work (which is great...that's how innovation happens!), but from an organizational perspective, PANDAS Network HAS TO DO THIS. When my DD was diagnosed with PANDAS, I was amazed to find this forum and the wonderful resource that is the collective parent community's knowledge and experience. This is incredibly powerful, but it doesn't replace the need for a structured, organized non-profit entity that can work on the advocacy/PR/research front. I believe that PANDAS Network is the closest thing we have to such an entity. I, for one, feel an obligation to support and promote their work which, ultimately, I think will benefit all of our children.

We did not have to retest pneumococcal, I think becuase her numbers were SO low. We only did the one IVIG (8 weeks ago) so far and she did great with that. Nothing else is scheduled. We're all watching to see if it holds with her. Her immunologist suggested that if she can't keep her IgG numbers up, he would potentially want to retest pneumococcal vaccines down the road, along with some other tests and potentially start her on more frequent IVIG, but for now we're in a holding pattern.