Hayley

So happy to hear your good news. Would you mind posting what your treatment was to get you to this point (and how long it took to see results). I know each child's story/response is different, but I do love the encouraging stories! Hope all remains on an upward swing for your family!

Is anyone else baffled by the fact that this isn't getting any media attention? I really don't understand it.....

I sent a private message to the FB page admins and they are exploring whether anything was in progress or if this is something they'd like to pursue. Wondering if we could appeal to the OCD foundation or another established organization that relates to our cause to be a point of contact for this. Has the media covered any of this? It seems hard to believe that they would not have picked it up by now locally at least? Anyone in Boston know?

I talked earlier today to a friend who is a former journalist and PR professional. She's been very involved in the Lyme awareness movement (she has chronic lyme that was undiagnosed for 18 years) and she and her husband run a PR agency. She (as I) was surprised that the local media hasn't been all over this with cameras at the hospital, etc. already. Her feeling was that there needs to be a hook and that the headlines should focus on the jaw dropping headlines we hear/see in the ads for the 11:00 news (e.g., "child with Autoimmune Disorder denied proper treatment and taken from parents at hospital....grandparents escorted from trying to see her...") but that with those two pieces in place, it should be an easy sell. Her immediate suggestion was some kind of press release that could be distributed to national media outlets and locally, ideally tying local stories to the issue in Boston, particularly because the Wray family has a gag order and details of their case can't be featured. E.g., If a family close to us in DC can tell their story about being denied treatment by a major medical institution (then being diagnosed/treated by another well established institution), the news features that story as a lead in to what is happening in Boston. Do we know if any media folks had been involved and/or press pieces generated prior to the gag order? My friend is already overextended and can't offer to take on this project, but did offer to review/tweak/advise on anything we might have written and/or write probono. Assuming that by now something of this sort is already in motion, any idea who might be involved that I could contact to see if they want to take up my friend on this offer? Please PM me if you know of anyone.

Wonderful to see that the community is keeping the momentum going even with Beth and the family under gag order. There was a suggestion in the comments on the Boston Children's Hospital FB page about setting up a petition through change.org to get Elizabeth released to another facility of the parent's choosing. I know the suggestion was by someone initially defending the hospital -- but who seems to be increasingly sympathetic with the family/cause if not fully "getting it" -- but I still think idea has merit. Since they are under gag order, I know we don't really know for sure what their exact wishes are, but it does sound like getting her transfered somewhere would be preferable to keepig her at BCH. Seems like this could run parallel to the media efforts. Is there anyone close enough to this to know the family's needs/wishes, but far enough from the epicenter not to be included in the gag order or to put the family/Beth in a position where they could be accused of violating it? Any attorneys out there who understand gag orders enough to guide us through this? I was just on change.org's website and it seems to be down (though I can't imagine they are out of business), but there are other online petition sites incuding www.ipetition.com. I know that getting Elizabeth moved to another facility doesn't reunite her with her parents, but at least it is a step towards getting her the appropraite treatment.

My DD7 has always been a kid who has needed a lot of sleep and we know her behavior (even pre-PANDAS) always slides when she is tired. After doing really well the past three weeks on a treatment dose of augmentin, we've had a rough week and we're trying to figure out how much of it is sleep and/or if she could be flaring. Last Sunday evening she had a wild day (her birthday party) and a late night (friends stayed late after the party). We suspected we might pay the price, but figured we'd take the chance given she was doing so well and she was really looking forward to the party. Thorughout the week she's had a lot of ups and downs, very emotional, weepy some evenings and/or early mornings, hyperactive at others, but not really too bad. She's had a few little tantrums, but we've felt like overall they were pretty age appropriate and any resemblance to a PANDAS rage/meltdown were more her testing limits, especially since we've reinstated some rules that had gone out the window when she was really at her worst. Whereas she was really clearly out of control of her own behavior during the worst of her original PANDAS flare (e.g., if the flare were over wanting extra cookies, no amount of giving in would stop the rage once it started), in this past week's tantrums it seemed she was acting out for a reaction (e.g., if we gave her the extra cookies, she'd stop). Then this morning she was just really off the wall -- wouldn't take her medicine, wouldn't eat breakfast, kicking, throwing, name calling, wild eyes, etc. We haven't seen her like this in well over three weeks (before she started at her current dose of abx. and this definitely felt more like hte rages we'd experienced before her medication was in place. She had gotten up super early this morning (thanks to her little brother) and was clearly tired. She does not seem to be sick at all though her sister has swimmer's ear (not contagious, right?) and a cold and she's in public school so of course she is exposed to stuff every day. My question for you all is this...when your kids are NOT flaring, do they have bouts of regression into PANDAS behavior related to exhaustion? How do you handle it (aside from heavily monitoring sleep which we try to do, but we also want to let her be a normal 7 year old). If not sleep related, how would you handle it given she's already on a steady dose of Augmentin and is showing no signs of other illness? It's just so crushing when you think you're making progress only to expeirence this type of setback..... Any advice?

We were told by the pharmacist that the liquid augmentin should be rifilled every 9th day to avoid it losing potency. In fact, we find that we really need a fresh bottle (even refrigerated) more like every 8 days. Just now switching to picking up the script refil once a week.

We're still pretty new at this, but we have kept it simple with my DD7 and said that she had an infection and it gets in her head and can make her really act and feel not herself. We tell her that we're working with great doctors who work with lots of kids who have this and that they are going to help us get better (she feels the difference -- about a week after going on full strength abx, her words were: "I feel less fighty") and that we're all going to make sure we keep fighting the PANDAS together until we figure it out. Dr. L was really wonderful with her and really reinforced this message: you are not alone and you will get better. She has a lot of friends with allergies and/or asthma so we have used that to try to help her feel better about the obstacles presented by PANDAS (e.g., J has asthma and that can make it really hard for him to breathe so he has to take medicine sometimes and sometimes he has to work harder at breathing than you do, but he does... you have PANDAS so sometimes it's harder to find clothes that work for you or to manage your feeling, but you have to try so that you can continue to do all the fun things you like so much). This seems to balance the expectations by making sure she knows that while medicine will help, she has work to do too and it may still be tough sometimes. As others above have said, we emphasize that there are lots of kids who have this and get better. We do try not to make promises we can't keep, but endeavor to be optimistic while balancing empahty and realistic expectations!

This story is just heartbreaking. I cannot stop thinking about this poor girl and her family. Just curious (and certainly not asking to breach any confidentiality if that's an issue), does anyone know how old this child is? I don't think I've seen her age written anywhere.

So glad you are getting some answers and have a plan! I felt like a huge weight was lifted once we had a solid diagnosis and protocol in place! On the subject of frequent urination, my understanding from dr. L (and I hope I'm not butchering this with my limited science knowledge) is that there is a dopamine response that impacts the urge/need to urinate. My daughter wet the bed for the first time in her life (she was dry at night before she was out of diapers!) since presenting with PANDAS. It's definitely related.

Glad to see I wasn't imagining this! Thanks! Sticking with liquid, but going to see about getting more frequent refills.

I don't think I know anyone directly who can help, but I'm in the DC area and am happy to help brainstorm and will keep thinking if I know of anyone who might be a good resource for this. Please PM me if you all convene to discuss....

My DD is on augmentin and responding well. She takes the liquid becuase she can't yet swallow pills (and doesn't mind the taste) so, at the pharmacy's recommendation, we refill every nine days due to the compound losing potency at about 10 days. Each time we cycle through a bottle, we feel like the last day or so of doses, she is definitely a little off and this last time, on the 8th day, I noticed that the augmenin (refrigerated) had yellowed a bit (it's usually stark white) and that evening she was really off. We are thinking that maybe the liquid is losing potency sooner than later. Anyone else have this experience? If so, how often do you refill? I'm thinking of asking the pharmacy to just refill once a week instead. Alternatively, for anyone whose kids are taking chewable augmentin, do they taste bad?

P. Mom, That's so strange. How old is your child? Is this low IgG, low IgA thing related to what Dr. T had called being a low strep responder? I keep reading about kids who have this getting sick all the time, but my daughter really rarely presents with illness. She literally did not miss a single day of school last year. Is she sick, but not showing signs because her antibodies are low or have we just been lucky (e.g., she's vulnerable, but somehow escaping catching stuff)?

Thanks for the explanation, Peggy. PowPow, Dr. T had initially recommended some labwork (we had a phone consult while we were waiting for Dr. L) but then our Dr. L appt was moved up so we waited until we could see her to draw the blood. I think those were on Dr. T's original script, but she was in agreement with his recommended tests and added to them.

After thinking we are seeing good progress on a high dose of augmentin, I got a call from Dr. L today saying that prelminary bloodwork came in on my dd and her IgG and IgA are very low and "she needs IVIG." We are meeting with her on Friday to review the labs and discuss IVIG, next steps, etc. When she called I was in a therapists office waiting room with dd (for a cognitive behavioral therapy consultation) and couldn't talk long or really absorb so needless to say I have about a million questions. One thing that struck me...I mentioned that we have United Healthcare and asked if we need to do this before 11/1 given I've seen postings here about them not covering IVIG after that date. She said that it wouldn't be a PANDAS diagnosis for the IVIG now, but something else that I didn't quite retain in the rush of it all (Maybe Hypogammaglobulinemia -- I gather this just from googling autoimmunity and low IG levels and I think it may have been the term she used) and that it shouldn't be a problem. The dosage of the IVIG is lower in this case than if it were being administered as a straight PANDAS treatment. She is now calling dd's conditions PANS/PITAND not PANDAS. Interestingly, the current bloodwork does show raised strep titers (Anti-DNase B Strep Antibodies @ 93 versus 0-77 range). She also noted that the coxsackie titers are high (we thought that it was coxsackie that prompted the current symptoms) but "old." I'm not sure how she can tell that but I assume she knows and this would mean that it wasn't coxsackie she had back in July, but maybe sores related to the autoimmunity issue. So confused. Does this make sense to anyone? Has anyone been down this path? I know I'll have answers from her on Friday, but right now my head is spinning and that seems eons away. We had thought that IVIG was a down the road thing at most and are now overwhelmed thinking we will be doing this sooner than later.

Wednesday we had the good fortune to see Dr. L who (finally!) gave my dd (7) a difinitive PANDAS diagnosis and prescribed 500 mg 2x daily of augmentin. We are seeing some improvement, but trying not to get our hopes up too much -- cautious optimism! Tonight just before bedtime dd began complaining of a sore throat. Incidentally, she is not one to complain of a sore throat and, in fact, has NO positive strep test in her history (though Dr. L and Dr. T both have indicated that doesn't mean she hasn't had it). My older daughter (non PANDAS) has had an awful cough the last few nights so we've been kind of holding our breath hoping dd7 would be spared. So some questions...could dd catch strep or some bacterial throat infection while on abx? If so, would it necessarily prompt symptoms or possibly not with the abx in place? would you get her cultured? wait and see? We're new at this and I'm not sure how to proceed. Any advice on how you all handle exposure and/or impending illness when already on a full dose of abx would be most welcome! Thanks!

My daughter has been displaying PANDAS/PANS behavior since July 8 and was diagnosed with coxsackie virus the week following onset. Her initial bloodwork drawn August 8 shows no bacterial infections (strep, microplasma, lyme, etc. all normal). We talked to Dr. T about a little over a week ago and he said that he sees coxsackie as a trigger often. (interestingly, my daughter has NO history of diagnosed strep, but several cases of coxsackie -- always with sores only in her mouth). He also suggested that my dd might be a low strep responder so there certainly could be strep there somewhere that we're not seeing. A nutritionist we work with had told me that coxsackie is an "opportunistic virus" so often if you are getting it, something else is going on that is underlying. Dr. T has asked for additional tests including coxsackie and some other viruses (the original blood work did not include a viral panel), but we haven't gotten them yet. We are seeing Dr. L. this coming wednesday and are waiting to draw blood until we meet with her so that if she has any additional bloodwork to request we don't have to do another blood draw on top of the one requested by Dr. T. I will be asking Dr. L about the coxsackie trigger and will post what I learn there.

So we met with a new psychiatrist today who has seen a number of PANDAS patients and generally seems very knowledgable. Three things have come out of it that leave us looking for feedback: 1) she does recommend starting a "microscopic dose" of zoloft to help lower DD's anxiety. We are nervous about this given all the negative things we've heard about SSRI's and PANS kids, but certainly woudl like to alleviate the anxiety level for DD if possible. For those who are using Zoloft, what is your dosage and woudl you recommend trying it? 2) she questions the possibility of a "Megavirus" given we don't have any strep evident in bloodwork etc. and DD's history of ENT issues/coxsackie and wants to do a MRI to see if there is anything evident in her sinus tissues, etc. or elsewhere in the ear, nose, throat region. Something about a kind of virus that hides in a biofilm somewhere that makes it very hard to detect? 3) While we were generally impressed by the doctor and thought she was very good with DD, DD did not really respond to her and says she doesn't want to go back. She instead wants to go back to this pscyhologist who is very nice, but no pandas expereince, DD had seen her for two sessions in teh past so it's not like there is an established relationship, but she always went willingly and would do so again. We feel like the psychiatrist is the better fit for her condition, but aren't sure exactly how she is supposed to treat her if she is refusing to go! Meantime, today was day three on the regimen of 1 dose Augmentin, 1 dose amoxicillin (and day 12 of taking amoxicillin straight after being on five days, off five for a couple of weeks) and in the alst 48 hours we have really seen a major difference in DD. Emotional libility is greatly improved (except when in the psych's office when she was quiet, nervous, figity, kvetchy), no tantrums, happy, herself, etc. and a little better eating and sleeping. clothing issues (OCD/Sensory stuff) ist sill pretty out of hand. So....any thoughts, feedback, etc. on the psychiatrist's recs and/or how to get DD to participate in treatment? similar experiences? Looking for any or all advice! Thanks!

We had a phone consult re: my dd yesterday with Dr. T. He was wonderfully supportive and thoughtful and overall very helpful. He does feel she has PANS and is trying to help us figure out what the trigger is so hoping to get some answers! She had been on Azithromycin on and off since August 8 (5 days on, five off, five on, two off before I got the doc to raise her to 7ML from 6 and make it ongoing), but only on her 8th dose today straight and her progress has been up and down (we had a good up phase before going off the last time and she's still not as bad as she was at her worst, but is very emotional/unreasonable and her clothing issues are awful!). He suggested a couple of abx options while we wait for more bloodwork, including: 1) increasing the zith to 10ML per day (5ML in the am & 5 PM); 2) switching to augmentin 2x daily (5ML each am & pm); or 3) doing an augmentin/zith combo. He ultimately advised the last option given her blood tests do not show any bacteria conclusively so if it's bacterial at all, it's likely silent and/or she's a low responder to strep. He prescribed each med one time per day; dosage: 5ML of the augmentin in the AM and 7ML of the zith at night. It made perfect sense to me when we spoke, but I'm now wondering...if the augmentin were to be the right drug for whatever she's got in her system, is this too low a dose since it supposedly works differently from the azith and a normal treatment dose would be 2x per day versus the 1 dose per day she's on? I sent him an email, but know how busy he is so I thought I'd ask around here in the meantime to see if anyone had done a similar dosage and seen results. She is 54 lbs.

We have a homeopath who did CRT on my oldest daughter (not PANDAS) for ear infections several years ago and I also just recently heard about the positive effects of neurofeedback. Trying to figure out if either is worth pursuing at this time for my dd who will be 7 next month. We're still pretty new with this all, not even dx'd difinitively due to normal bloodwork/no documented strep. First symptoms started 7/8 and while we started Azith 8/8, we were on again off again due to a neuro who didn't know her stuff. We are just now (thanks to my pediatrician!) getting her daughter on a stable course of ABX that seem to be working overall (though still not fully stabilized with some ups and downs), waiting for a phone appt. with Dr. T this thursday and an in person with Dr. L early October, and have a parent consulttion appointment and appt. for dd next week with a psychiatrist who is suppsoed to have pandas expertise. Anyone who has tried Cranio Sacral Therapy and/or neurofeedback with their PANDAS/PANS kid have thoughts on whether I should get started with either or both sooner or later? My daughter just started school and is doing ok under the circumstances, but I feel like it's a bit precarious so I don't want to start pulling her out for 1,000 dr.'s appts and I realize I need to prioritize. Maybe wait to see what hte meds do first? Or has one of these approaches made a real difference for anyone out there alone or in combination with other protocols? And if anyone who swears by neurofeedback has used someone in Maryland/DC Metro area who they can recommend, please PM me with contact info. Thanks in advance for any feedback!

FWIW, NIH wouldn't take my daughter for the study becuase she did not have documented history of strep I do have to say, as I'm looking back on old emails (I haven't been able to copy and review her medical records so I'm going by old emails wehre I mentioned my kids being sick), I can't help but wonder if some of her past coxsackie diagnoses may have actually been strep. She only ever had sores in her mouth (never hands or feet or even outside her mouth) and they never did a strep culture when diagnosing coxsackie. In any event, coxsackie seems to be a trigger, but can't help but wonder what was missed and when given I'm hitting so many walls without the strep diagnosis!

what dose was your dd getting on the "on" days, and how much does she weigh? She weighs 54 lbs. She was initially on 6.25 ML @ 200MG/5ML so I guess that's around 250? When she just got bumped up (starting THursday night) we increased to 7ML at the same concentration. Thanks all for the thoughts and feedback. I'm scheduled to talk to my pediatrician on Monday and hoping to get her to adjust the rx until I can get to Latimer. Worst case scenario, I have a phone appt. with Dr. T. on Thursday and am hopeful that he can either rx or advise my pediatrician to do so. I'm hoping that there will be enough in the bottle to do at least one extra dose and if not, may be able to get the script renewal which was for at least several "maintenance doses" she is supposed to be taking every fifth day after we run out of the current prescription. If I can get even two of those doses in hand, I shoudl be able to stretch this out until I talk to Dr. T!

PR40- What PANDAS doctors have you seen that turned you away? They think it's not PANDAS/PANS? Has she been on antibiotics?

As some may recall, we had a doctor put my daughter on five day off, five on Azithromycin. We got her back on (only with a five day dose though we are working to get our pediatrician to extend it) Thursday night (so she was off for about 60 hours). She was pretty good friday and yesterday morning, but then went to a party where she had some anxiety and it set her off for the rest of the afternoon/evening. We felt very discouraged because we really thought she was making progress (we hadn't had emotional lability/rage since the prior Sunday and even that was mild. She had an awful evening and woke up at about 5:30 this morning very agitated. She snapped out of it by 7AM or so after having a little something to eat and seems pretty good for the moment. So...a couple of questions, When making progress on an antibiotic, do you still have bad days? SHe had some stressors yesterday afternoon that seemed to exacerbate the symptoms and this morning (obviously since she was up at 5:30!) she was tired. We generally do notice the emotinoal lability is greater when she is tired or hungry, but in the back of my mind I wonder if maybe the antibiotic isn't working afterall.... Any feedback would be appreciated. Thanks!