LNN

There was a brief discussion on this at IOCDF between Dr K and Dr N. Buster can give you the details I leave out. Dr K speculated that the Clav acid may be the anti-inflammatory piece of the puzzle that may be doing more to keep Pandas in remission than the prophylactic component of the amox. If so, he reasoned, 875 mg/augmentin might be more beneficial than 1000mg/XR because the 875 dose has a higher % of clav acid. But Dr N spoke from the audience and wondered if the time release aspect of xr might be more beneficial than the inevitable time lapses of trying to give 2 doses/day exactly 12 hrs apart (something we struggle with esp. now that DS is sleeping late in the summer). It was a toss up - an item that would warrant more consideration but no conclusions or consensus reached.

I was confused by the recent email regarding Sammy as well. The email referred to 6 years of remission but at the conference, Beth and Dr Nicolaides stated at the end of the presentation that it's been 1.5 yrs since the last episode and that when exposed to strep Sammy still feels symptoms coming on, may still see invisible walls, but that 2 weeks of abx have succeeded in putting things back into remission, however they are defining it. So the story is not clear to me. I think everyone would agree he's far far better than that dark place. So I don't mean to detract from an obvious recovery. I'm just not clear if all Pandas worries are forever behind him. Perhaps someone who corresponds with Beth can get clarification.

Here's what I took away from the Pandas track - we are fortunate to have some very smart, very caring, experienced doctors willing to take risks and "buck guidelines" on behalf of our kids. They need our support. I bristled at a mass email that blasted -by name- a doctor who has put much time and research into this disease. But I also realized that each is making decisions based on their experiences and by nature of their practices, they are going to see different slivers of the whole picture. Have a hammer - you see nails everywhere. Have a wrench - you see bolts. Be a parent - you see a bunch of loose screws and parts that need fixing and need the whole tool box. In spite of having "experts" on board, we as parents still can't stop being the advocate, the case manager. We unfortunately don't get to quit that job even when we get to the believing doctors. The great part is what Buster said in a different thread - they are all willing to come together and share ideas. They are not locking themselves in their offices and insisting they know it all. This is cutting edge and we are going to have to not endure, but participate in, advances in knowledge. I'm with Kim. It's conferences, phone consultations with each other, research - that will help these doctors come closer together. Like us, they are using what they've experienced to make decisions. It's in their nature to want to say things with authority. That's what doctors are "supposed to" do. Give us the answers. I did not share complete agreement with 100% of what any doctor said. It didn't fit my personal experience. But we as parents need to keep sharing info and educating each other and our doctors. Change is happening and like TMom said - we have come so far. I really think we as a group can make a difference in small and big ways - we are an untapped power. We are all so used to being overwhelmed by this crap disease and being "victims" to it. But it feels like we ourselves are reaching "puberty" and growing up and coming into our own, discovering we have strengths and skills. We just need to figure out how to use it to make positive changes continue. Ideas welcomed.

Sorry - I lost track of the thread where you were trying to get an appt with Dr K. Did that ever pan out? (no pun intended).

That's so great! Print your post and put it on the fridge. Burn this into your memory banks. Know this - and more - is possible!

What you describe sounds like it could be choreiform movements (like a milk maid's grip), rather than a tic. We told our son he was allergic to strep, like other people are allergic to bees, peanut butter or pollen. I'd ask the teacher if there were some other option - like maybe they could both hold one end of a rope or bandana. Explain that your daughter has an autoimmune disease that causes a movement disorder. Don't describe it as controversial (not even sure I'd use the word PANDAS). I found that when I presented things matter-of-factly, it's accepted by most people. You can tell her the disease can go into remission, but right now it's active and your daughter doesn't need anything that calls attention to it. You don't need to apologize or "ask" for cooperation. I think if you're polite but your voice carries an expectation that this isn't something negotiable, that an accommodation is both reasonable and expected, you will hopefully be able to make short work of it. Good luck!

Haven't checked for lyme yet - what is herxing? Also, can he have the lyme test while on zithro? I don't want to stop the treatment. per wikipedia The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours. The intensity of the reaction reflects the intensity of inflammation present. The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2] The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7] Sometimes the start of antibiotics can make symptoms worse before it gets better...

Yes, I totally get you. That's why it took us nearly 2 years to decide to do IVIG. I remember early on saying "no way" to prophylactic abx. IVIG and Pex were out of the question. We've now done all 3. What the final tipping point was for us was that we weren't getting long periods of 95%. We'd get 100% briefly and with one wayward sneeze, it would all be blown away again. It was like a brief glimpse of sunshine during a long cold winter. It just wasn't enough. We are 4.5 weeks out from IVIG. Last week was bad. We had one day that was as bad as it was during the worst period 2 years ago. When I spoke with Dr K at the conference, he was of course thrilled to hear this. But then, he wasn't the one who had to keep two kids and a husband from killing each other for that day! But on a bright note, this morning, DS was extremely social, happy and alert. He started camp today and at noon, I popped in (it's next door to where I work) and he told me he was fine and ignored me because he was too busy playing and interacting. he hasn't been like this in a very very long time. Dare I hope?

Ah, my bad. I wasn't at the Cunningham/Leckman presentation. I was unsuccessfully trying to get my son to participate in a kid's OCD workshop at the time.

The word "cure" wasn't used. Dr K defines success as 75% improvement of symptoms at 3 months post treatment. No one said anything with absolutely certainty. They all admit too much is unknown. They could only speak from their personal experiences. They all seemed open to new ideas backed by research and were respectful of each other's protocols. But for anyone hoping for one solution, one "answer" - that wasn't there and probably won't be for many years. The one disappointment for me was that at both AO and IOCDF, the doctors defined successful treatment outcomes in terms of months, a year at the longest. I suppose that that's a long horizon for a research study or even for a doctor who may not see patients once they get better (unlike a GP who may see you in good times and bad for many many years). But as a parent, it's hard to define success they way they do. I'm shooting for 100% forever. Or at least 100% most of the time and 95% the rest of the time. I think that's where the "grass roots" efforts of parents comes into play. We all know that if we expect mediocrity from our kids, that's what we get. If we expect 100% effort, we're more likely to get that. So we have to keep expecting and asking our doctors to strive for 100%, even if all the unknowns still have to be worked out. That's why there's a "race for the cure". Survivor rates, remission rates go up for those disease where patients refuse to settle for less. But we've got a long way to go.

I don't want to speak for Buster (couldn't come close if I tried). But I think it was Dr Nicolaides who stood by the "antibiotics only" treatment. Dr Murphy was at the conference, but she wasn't part of the PANDAS track. If he's referring to the doctor who co-presented with Beth Maloney, that was Dr Nicolaides. She didn't speak against IVIg or pex per se, but stated the abx only was her protocol. I presume because she has had positive experiences with this. I can speculate that because she's a developmental pediatrician, she doesn't have experience with the other treatments. But she was present for both Dr L's and Dr K's presentations and perhaps now has some food for thought. She was the only doctor who said that she needed an above normal ASO or anti-D Nase B titer to consider a Pandas dx (she felt anti-D Nase B was more reliable). The other doctors didn't feel this was a requirement and that the sum of other clinical symptoms would be persuasive. They also felt other infections besides strep could trigger subsequent episodes, so they didn't spend much if any time discussing titers, since they often see kids after they've been sick a long time and they probably aren't seeing the child's first episode. It's also possible Buster attended Dr Murphy's presentation or spoke with her. So I will wait for him to chime in.

There's a Holiday Inn a few blocks away that gives a discount for hospital patients (at least they did last summer when we were there). You can find it listed on the hospital's web page here http://www.georgetownuniversityhospital.org/body.cfm?id=230. Looks like the Savoy also gives discounts. I can't imagine the hospital agreeing to pex as outpatient. The biggest risk of pex is infection of the central line. Any insurance co. should know that and I'd hope a call from the doctor directly to the insurance co. could settle that. That just seems so odd for them to say something like that. As for relaxing - Georgetown PICU and Hem/Onc areas do a great job keeping the kids entertained. Both my kids (the one being treated and they one who had to tag along) were much happier there than they would've been stuck in a hotel room. They have crafts, Wii and XBox stations, internet, board games, a therapy dog, a fridge that parents can keep food, a microwave, a parent's laundry and lounge - they really take steps to ease the stress. And one parent can sleep on a cot in the child's room. And yes, removal of the line was the worst for us too, but mostly due to the pain of removing the adhesive bandage (that was stuck to some very very sensitive skin). Make sure they use lots - lots! - of adhesive remover, like 50 pads of the stuff - and it should be much less painful. Good luck!

Have you tested for Lyme? Could this be herxing?

You can also get a mouthwash/rinse from your dentist that is anti-bacterial. I have a bottle from when I had to get a crown awhile ago and my son uses it when he loses a tooth. It seems to help prevent blips.

For me, the best part of the conference was the 36 hours where I got to feel "normal". When we first walked into the lobby of the hotel, my son's eyes opened wide and his mouth hung open in awe - in front of him were 2 sets of escalators, 3 elevators with golden doors and three glass elevators - he was in heaven. We had to promise he could ride them all if he would just let us check in first. As we were checking in, a girl behind us told her mom "Look at all the elevators! Can we ride them?" This is the first place I knew people would actually smile with understanding. Another boy walked by with surgical gloves on - while he obviously had serious contamination fears, he was doing his best to still function in the world and go to a conference filled with germy people so he could learn a few things. One doctor in a kids session explained how she used to always make her sister re-do things over and over (something we've always labeled as bossiness in my son). She said she did it because she was afraid something bad would happen to her sister and so she had to have her sister re-do things over and over so she could take a mental photograph "just in case" she lost the real thing - she needed to burn the memory into her brain. I had never thought that there were "logical" reasons that might be torturing my son and driving his bossiness. We just figured he was being annoying and could control it. Maybe he has OCD thoughts he just can't articulate. These small things made it a great experience for my whole family. Simple exposures to others who understood and in some cases to people who made our own struggles seem minor. I went to one seminar where we were told to put a drop of honey on our hands and then shake hands with others around us. No one wanted to shake hands with people who had "sticky" hands, and we all sat uncomfortably for the next 30 minutes, anxious to go wash. We all felt "contaminated". We were told to rub the hair on our eyebrows in the opposite direction that they normally grow - and we weren't supposed to "fix" it so that it felt "just right" for the rest of the session. It gave you a small glimpse of what our kids deal with all day. I think for parents who were new to Pandas, it was very confusing to hear each doctor explain their protocols and in some ways contradict each other. But I think it was great that some doctors attended the others' presentations and heard their views. It was also great to finally put faces and real names to some of the parents here, and have a family reunion of sorts. Like I said, it was a gift to feel normal and understood. Made me realize that I have to try even harder now to give my son that same gift and put more energy into understanding his emotional needs, not just his physical/medical needs. To "belong" somewhere was a great feeling.

I read all of the responses. And I had forgotten how amazed I was when we first started our journey that this was so controversial, that so many people had made up their minds against Pandas. A year or two with doctors who get it, conferences and media coverage that embraced it as matter of fact - made me forget what the outside world still refuses to acknowledge. But this blog is an excellent road map for the work that remains to be done - by an organization, by doctors, by grass-roots efforts - most importantly by researchers. If you go thru this blog, you start to see an outline of what our community needs to be doing. The antibiotics argument - yes, it's a valid concern. But a PR/media campaign needs to be aimed at the antibiotics given to livestock. The need to push development of a rapid way to "type" the strain of strep. Resistant abx develop when you use a shot gun approach to strep. "Well, we don't know what it is, so we'll throw amox at it." Well, if amox isn't the best abx for that bacteria, you've just helped reinforce resistance to amox. But if you could type the bacteria in the petri dish at the time you did the rapid or overnight strep culture, then you'd know which abx should be given and resistance would be less likely. The "no proof" argument - Dr Cunningham's and Dr Hornig's research need to be replicated. IVIG studies, work by Dr K and others, carefully developed clinical questionnaires need to be funded. The "RF and Sydenham's is rare" argument - we need a list of statistics that can say, well, yes, in the US, xxx cases have been diagnosed, but in Zaire, xx,xxx cases are diagnosed, where abx are less available. I like the post by the guy who points out that 60 years ago, ulcers were caused by stress and other accepted diseases didn't exist. We collectively need to keep doing our part to not just educate ourselves, but to keep educating the general public and to keep pushing for more research. Hats of to Kelly, Vickie and others for taking us a step closer. This blog is a reminder of how far we've come in 10 years and how much further we have to go.

My post to Suzan was that it sounded off-base for a doctor to use a response to a supplement as a guide to whether to proceed with IVIG. To me, it's the same as saying if your child responds to an SSRI, we won't do IVIG. (with her follow-up post I now understand where he's coming from, but some Pandas kids are helped somewhat by SSRIs but they still have Pandas and still benefit from IVIG, so I'm not sure a positive response to GABA means there's no immune stuff going on). In my experience, the prednisone taper halted the auto-immune response, so I think of a taper, in conjunction with antibiotics, as a treatment option. It ended the episode and gave us complete remission for a significant period of time. For my son, it wasn't a band-aid. I personally don't feel supplements, SSRIs or ibuprofen are able to do this by themselves. That doesn't mean they aren't helpful. Just not something I would feel comfortable using as an indicator for IVIG. It's only 3 weeks post-ivig, so too soon to post anything on that. Suzan - in response to your most recent post - I'm under the impression that IVIG is most helpful when done during an exacerbation. If your daughter is doing better, it may be best to wait until she's in an episode. But someone else may have better info on this. I think you're also talking about low dose IVIG? And I know very little about that. Sorry.

I'm in the camp that feels prednisone is not necessarily a temporary treatment. For us, once the infection is cleared, or the person who's exposing my son is cleared, if we do a prednisone taper, the pandas episode is successfully and completely halted by the end of the taper. It's only with a new exposure that another episode will start (or if the triggering infection is still around). I know not everyone agrees with this, but it's been our experience. For us, it's had phenomenal results.

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas. Hi Laura, I see two in your zip code. You have to zoom in quite a bit to see the two. I think one says yes and the other no on fever. I can see why surveys give everyone unique ids :-) Perhaps in the future, I could ask people for a unique code -- that way they don't have to use their login, but can see the record. Buster Got it. I know the other dot. Thanks!

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas.

Yes, it's a miracle drug for us too. Too bad it can't be a long term treatment. My son is a very different kid after a taper. It gives me a glimpse of the awesome kid trapped inside.

I just sent the link to about 10 families I've talked to at one time or other and posted the link to the survey on another OCD forum I belong to. I know of a least one other case in my town, one other in my pediatrician's practice, and two other near me from the other forum, so if you see more dots in northern CT. that might be them. PS- if the person in West Hartford would like to PM me, that would be great. Laura

What's a "mentoring style" of teaching? Re: the puzzle thing - the interesting thing in our house is that I always know we're coming out on the other side of an exacerbation because he suddenly re-discovers an interest in building things. He has a marble roller coaster - you build snap-together tracks, make loop-de-loops, and then run marbles on the course. When I see that come out of the box, it's like the sun coming out from behind the clouds. (but he still can't do puzzles well). The thing your son does with re-tracing letters is a very common OCD thing. You may want to probe a little. Often it's a compulsion to get each letter "just right". In my son's case, he could care less if the letter is "beautiful" but he'll re-trace so that there are no open spaces - an "O" has to be completely closed, even if it means making some bizarre line to connect the closure. They'll erase until it meets their OCD need. Thanks for the book tips. DS (8) starts 3rd grade in the fall and he's a very reluctant reader. He too finds the books at his level very "lame". But he also struggles with the same thing EAMom described - read the first and last letter and guess at the rest. I'll see if I can find a few of the books you mentioned. I know that on a prednisone taper, his reading improved dramatically (until the next episode a short time later). What I don't get is why more researchers in more fields aren't fascinated by our kids. Instead of arguing over whether Pandas exists, we have a group of kids who represent "before and after" in so many ways. OCD experts should be snapping pictures of their brains to see what they look like when they have OCD and when they don't. OT experts should be studying how fine motor skills change during and after. Tic research, executive functioning, teaching/learning disabilities, you name it. We have kids who have light switches. You can study the same kid in and out of exacerbation and gleen a treasure trove of info. Instead, egomaniacs get paid money to write articles about zebras and horses... sorry - I digress...

We haven't had our DS tested. Had one scheduled but were told by our Pandas doc it wouldn't measure the real him - just the Pandas issues. That to get a true picture, we should get him healthy first and then see what issues remained. So we took the $2K deposit and put it toward pex : ) Much of what you guys write about rings true. Doing math in his head, horrible spelling (though he'll memorize in his head, get 100% on the week's spelling test, then not retain the words a day later). He struggles with reading fluency because he has little ability to decode the sounds in a word and finds language rules so frustrating (too many exceptions to the rules), that he has a deer in the headlights attitude toward language arts. I feel so bad for him. I don't know how to get others to understand how bright the light is under the basket. What about puzzles? For the longest time, he refused to do puzzles. Yesterday he did one that was at age level, but he misses such obvious clues - trying to use a piece without a straight edge as a border piece, taking a picture piece that had a horizontal line and trying to insert it with the line in a vertical position... He just doesn't use visual cues the way he should. For 3 years, I've raised this with teachers and they just shrug. I've always had this nagging feeling that there's more I should be doing for him. Not just the traditional stuff he'd get with an IEP (we recently got a 504). I mean something extra-curricular to help - that he needs to have a lesson delivered in a non-traditional, action-based way. I equate it to someone who's brilliant and had a paralyzing accident. They must be so frustrated to have people suddenly shouting at them as if they're deaf, or speaking slowly as if they're stupid. They must be so frustrated with themselves, knowing they have so much to share but so angry at bodies and brains that don't cooperate. Does anyone know of any programs, books, teaching approaches - designed specifically for 2E kids? I feel like my local resources are somewhat sympathetic but completely clueless and have no tools but the traditional ones that I feel are ineffective for Pandas issues.

For what it's worth, my sons' best friend suffered from chronic strep all last fall. We didn't find out until I met the dad at a birthday party in January after the boy had had a T&A. Never could figure out why my DS kept having vague, up/down issues all fall with no strep in the house. Then the light bulb went off. The dad felt really bad. But neither of us knew. To do it over again, I'd have taken more steps, done a better job at educating the class parents about our situations. But keep him away from this boy? No. That would have done far more damage to both boys. You need to be cautious, but you can't become a hostage. So despite my first post about making a different decision than you're making, I do fully understand and support your decision. The whole family suffers from this disease. If R&R with truly good friends is what you need, and everyone is doing all they can to take preventive measures, then I agree with your attempt at balancing paranoid and stupid