bobh

Sorry, no experience with that issue and lawyers. However, I did see (on a lyme board), and trick about getting it reversed. I believe that this describes the trick, and how it doesn't necessarily work as advertised: https://www.snopes.com/fact-check/hipaa-medical-hack-insurance-claim-denials/ If you hunt around you might find other similar advice - there used to be various web pages devoted to it years ago.

So sorry for your struggles. In my experience, OCD has a thousand faces. The most common mistake, is that what I feel is OCD is called a "complex tic". If your daughter doesn't have any tics, then this isn't a consideration for you. Let me know, and if she does we can converse more about that. Many children hide their OCD because they are embarrassed about "appearing crazy", and some do a really good job of hiding even from their parents. One of our son's obsessions was telling us everything, and that included all the other OCD habits, so we didn't have this hidden issue at all. OCD (to me) includes things like skin picking, or hair pulling - does she exhibit either of those? Another one is religious scrupulosity. Here is a site with some discussion of a couple uncommon or hard to notice displays of OCD: https://psychcentral.com/lib/symptoms-of-ocd/ . Finally, the definitions of PANS (and PANDAS) have been influenced by a strict need for a tight definition for research purposes. And then, with the PANDAS controversy, certain common symptoms (such as tics) were actually excluded from the definition for political reasons, namely, in a consensus conference (where there was an attempt to placate doubters), and to avoid further backlash from the PANDAS naysayers. It is also affected by the debate between "splitting and lumping" (those that want narrower more specific definitions, vs. those that want more open, wider encompassing definitions). So, the PANS box is far from perfect, and if in the end your daughter does not quite fit it, that doesn't mean you won't benefit from some of the PANS treatments, as for example, some Tourette's suffers have.

Doctors can sometimes get intensely interested in figuring stuff out - but usually only when it is their own kid. So, you are her only true hope - and she is lucky to have you. I don't know anything about the other streps (I see from Wikipedia that there are B, C, D, F, G and H).

Congrats on taking the tonsillectomy step - imagine that stuff still there, constantly provoking. I may be wrong, but I doubt you will find anyone here that has treated at that age. But it is still usefull to type IVIG into the search box (near top right) once you are in this forum, and read some of the stories. There is one of an 18-year old, that ran into trouble I think also because of underlying infections.

Here is another link about a Group B strep experience - I haven't watched it all ... https://www.facebook.com/navigatingmotherhoodnaturally/videos/1934456019948074/

So are you talking about Group B strep? Strep B is excluded from the PANDAS definition, and it usually doesn't cause symptoms in adults. But pregnant women are screened and treated for it, because according to Wikipedia, "Group B streptococcal infection can cause serious illness and sometimes death, especially in newborns, the elderly, and people with compromised immune systems." (https://en.wikipedia.org/wiki/Group_B_streptococcal_infection) Your pediatrician will naturally be dismissive if he/she doesn't believe there is a compromised immune system involved. I don't know if it is a problem worth getting a tonsillectomy for.

Sorry I didn't reply earlier - have not checked into this forum since I wrote July 6th. I think the one that we used was Quidel Quikvue (we actually lent it to someone and don't have it right now). It is used by some MD's, but then became harder to get some time back. It is often hard to figure out what is making him flare. We had one slowly getting worse over months, and then we did a teeth cleaning that dramatically increased the flare. That's when we found out he had mild gingevitus (hard to get him to brush when he is in a bad state), and (our dentist confirms), bacteria can enter the bloodstream directly through the diseased gum tissue. It also took a while to clear it, but we did. But suppose we never did a teeth cleaning - it may have been a while before we latched onto that problem.

A December/January start seems unusual. It is neither high flu season, nor allergy season. Being the time of year that windows are closed, I would wonder if there is something in the house, that doesn't get diluted until windows are generally open again in June. Mold is just one possibility, another is pet allergies, if you have pets.

Hello newfie (are you living on The Rock, or settled elsewhere?): Our son did get better without IVIG. But he had a lot of abx (that helped), a steroid burst (that didn't), ibuprofen (that didn't), some SSRI (very very low dose, that helped dramatically once at that low dose, didn't later) and plenty of supplements. One thing that scared us about IVIG is, that after going through the expense and trouble, there seems to be the possibility of regression after getting strep again. At least, there are some stories to that effect (I'm sure if you searched IVIG in this forum, you would find all kinds of experience). I subscribe to "try low hanging fruit first". That is, simple relatively inexpensive things that might deliver gains of significance. One of them is ibuprofen (but you can't continue a high dose for a long time - this is just a rescue protocol). Another that is even lower hanging fruit (because it is so cheap and easy to do, and not harmful at sensible doses) is to have him drink baking soda and water every day. I didn't try this (our son was better before I heard of it), but I would have had I known, based on the research behind this article: https://www.sciencedaily.com/releases/2018/04/180425093745.htm . We did try various supplements, and we did find one (phosphatidylcholine) that did help our son (but doesn't help everyone). With supplements, I would be very careful - some make some kids worse. Our kid got worse on probiotics, and I have since found that this is not that uncommon among PANS/PANDAS kids. So there is lots to try even while you book and wait for an IVIG appointment if that is what you want to do.

I would guess that we don't know enough about how everything works to pinpoint the difference between the two options that you suggested. The way the immune system works alone is particularly complicated, and that's just what they understand. From a practical point of view, what would you do differently if you knew the true answer to your question? The child shouldn't stay on (a significant dose of) steroids over a long haul, so this is a rescue option. Or, is this trial about proof of autoimmunity?

I wouldn't hesitate to call Dr. L. (but I don't know how she works with the phone). I also got a home strep test kit (a bit of work to do the test properly, but the convenience and cost reduction is significant), so you might consider that, so you can test at home any time without worrying about the effort of taking him somewhere. Is the Motrin helping?

With new symptoms for a new supplment, I would worry about being allergic to something in it. But what you describe doesn't sound like allergic response. I would think that new herx symptoms could arise when something new or different is being attacked (compared to what the previous herx symptoms were). Besides, we have found that symptoms morph over time. So I would reconsider the herx possibility. If they keep up over the long haul, I would tend to discount a herx theory (because herx should diminish with time, if the stuff is working to lower the number of bad guys).

Also can't relate - our kid is not as social partly because of the PANS history. From this side of the "grass always looks greener on the other side" fence, I would almost like to have the problem. But I don't mean to say it shouldn't be a struggle/problem. Maybe dipping into ADHD strategies (I don't know much about them) is one approach?

Yes, tonsillectomy (and possibly adendoids) is one step. I once tabulated tonsillectomy experiences here from this forum, and concluded that those that seemed to do best had abx both before and after the operation. Some sinus infections are also only cleared with surgery, is that true? As I say, I haven't researched this one, but I thought I have heard of sinus surgery for the purpose of removing infections that otherwise don't budge.

msmom, I would pull that thread, as to what can be done about those sinuses. I am not familiar with the options, but because it involves biofilm, I would think that abx may not completely eliminate an infection there.

I wouldn't say "can't" - it's just that there may be an increased risk of bleeding, especially for the elderly or those that have kidney or liver disease. It is not uncommon to have some interaction, and the decision to go ahead or not depends on the potential benefit. I have had some doctors say with a "moderate" interaction potential "I'm not worried, go ahead". If it still worries you, the risk is quite reduced if the ibuprofen is very short term. Make sure he doesn't have a current wound that is bleeding, and if he gets a cut or injury, take him off as soon as you know. Even with just a few days, it could show up as a significant benefit. The line from your doctors "but the treatment is the same, ssri and cbt" really angered me when I first heard it. That is patently not the case, as was admitted when your doctor let you try zith for a month. That is definitely not a treatment for ordinary OCD. It is important to try several classes of abx - some get no result on one, and tremendous results with another. It may also take longer than a month in some rare cases.

What does did you use in the end, and how has it been going?

Prestopony's response reminded me of how common sinus issues, or other hidden "biofilm" infections (tonsils) are. "After abx" should be after several different types of abx, including significant doses, not just prophylactic doses. Our ENT didn't think our son's tonsils warranted taking out (he thought they were pretty normal), but we knew differently, and he obliged. When he came out of the operating room, he commented just how awful they were when he had them out and cut them open to have a look. Post-tonsillectomy was a long, slow improvement for our son (the year after the tonsillectomy was noticeably better than then year before, according to our logs). It is a cat-and-mouse game chasing triggers. We also had a significant flare from a teeth cleaning, and only then found out that the mild gingevitus that he had (not enough brushing) had been responsible for a months-long flare. He improved considerably after that was dealt with. If you really believe all possible infections (have you swabbed for perianal strep?) and environmental triggers (mold, allergens) are dealt with, then there is a deep rabbit hole of supplements, some of which can have dramatic effects (positive and negative) to jump into. I would tend to go that route before plunking down $40k for IVIG. But it takes patience to do it right, which is with just one change at a time. I have heard several stories of parents who in desperate agony, take their kid off everything they have piled on, only to find them improve. It's because they added lots of stuff at once, and one or more of them made the child worse. For example, probiotics trigger some kids (we were on them for 2 years before we figured that out - what a lot of suffering we caused, by not carefully adding/checking when we first added that).

Absolutely could get a herx from that combo. The thing to be careful to distinguish herx from, is an allergic reaction. If his PANS symptoms are getting worse, and no new rash or wheezing (i.e. allergic reactions), then it should be a herx. If in any doubt, go back to the prescribing doctor - I am not a doctor!

Our son also had brief "absence seizures" at the beginning. We eventually tested for lyme, bart, babesia and others, but only ever found ehrlichiosis (another tick-borne infection).

Very sorry about the terrible difficulties. I would second the idea that a yeast infection could be at least partly responsible for new symptoms when on abx. However, I would be very cautious about adding probiotics. Even though abx harms good gut bacteria, lots of kids have been made worse by probiotics. Whatever you do, try as best as you can, to make one change at a time - so you can be more sure of what makes him better or worse. There are some people that have improved by stopping all meds and supplements at once. They won't know what was causing the problem, but it is a strategy that has worked in rare cases.

On the "long, slow, road" of starting low and going slow, particularly on Zoloft, I would like to add that it is not always slow. For other similar meds, there was a study up here in Canada, where they equipped patients with immediate (daily) feedback apps (or similar) once they started an SSRI (or similar med that could take many weeks to work), and they found that some patients had relatively quick notable response to the med (it must have been stastically significant, because they emphasized this as a conclusion. Our own experience on 2.5mg of sertraline (Zoloft), we had a dramatic change at about 24 hours. (Yes, 2.5mg, that is not a typo). I was plotting a certain measurable symptom, and it dive-bombed so dramatically at 24 hours, and so permanently afterwards, that it could not (as the attending physician felt) be reasonably ascribed to co-incidence. After I did a bit of a calculation of just how unlikely coincidence was (the symptom had been sky-high for months, and we had months of measurements of it - we were quite desperate), the doctor admitted that it was "a really big co-incidence", and then eventually conceded that calling it coincidence was unreasonable. But then he forgot that he conceded that when we talked about it months later, and still thought of it as an "amazing" co-incidence. That doctor couldn't accept the idea that they could work fast, even when I argued that side effects can occur fast (which he accepted) - so why not call this a fast side effect? I suspect that they could work fast on the sensistive 30+% that Murphy mentions in her paper. All this to say, don't necessarily reject positive effects that happen quickly

Virginia seems to be a hub of PANS/PANDAS patients - that is the impression I get from a couple of facebook groups. So I would believe that there are a lot of people to talk to in Virginia, but I don't know about doctors. You can check the list of docs at pandasnetwork.org for Virginia, or find some of these groups (google PRAIkids - the woman that runs it is in Virgina). If you come up empty, reply back and I could probably find some contacts from within a group that I am in.

My guess is that there is something around that is trigger him. This is the endless hide and seek game we play - we try to find each trigger and eliminate it, and then another comes. It could be anything. For us, it has been: - when someone else in the house sick, not necessarily strep - when he had a teeth cleaning done - when he had mild gingevitus (from not brushing regularly enough) - when he had ear aches - on long abx and developed yeast infection - probiotics The list can be much much longer, and of course different for different people - people here have talked about mold, allergens/pollen, and sinus infections as significant triggers.

I have no legitimate insight on puberty changes, and have also not seen or heard any sensible explanation. But I can speculate! Speculation is dangerous, so "reader beware", lest you buy into something that doesn't deliver. I know of someone with what was thought to be fibromyalgia (but is now thought to be lyme) that has had debilitating symptoms for many years (7+). The only respite she got from these symptoms (and the respite was dramatic, because the symptoms were) was when she was pregnant with her first child. It lasted until after she stopped breast feeding. But that respite never happened with the second child. If they could figure all that out, that could be useful. I have heard of other folks getting new problems with pregnancy, including them not resolving after the pregnancy was over - so it seems that there are all kinds of possibilities with hormonal changes.