bobh

Here is a post from another Brisbane mom that asked the same question almost 6 years ago: One of the replies mentions ozimum as another member from down under.

I don't have experience with your question, but can imagine an argument for the opposite, namely, get rid of such triggers that are easy to get rid of before trying expensive or invasive treatment, lest the latter not work. If you are or suspect to be sensitive to mould, best to be out of the house when the cleaning is done, and have the room well-aired out (with doors to the rest of the house closed during removal and airing out) before you return. Winter may not the best time for such a thing, but the downside is just a little extra heating to get the house back up to temperature.

We don't have a clear biomarker for PANS/PANDAS in children, so we won't have it for unborn children. Probably the best you can do for knowing the chances of a 2nd PANS child is Dr. Murphy's paper "A Survey of Pediatric Acute-Onset Neuropsychiatric Syndrome Characteristics and Course". It reports that 12 percent of 698 PANS patients have at least one sibling with PANS. We have have 5 children, only one is PANS.

Great that you turned a corner - congrats!

I wonder if for some, post-puberty PANS might display differently than it does for a 10-year old, for example. Looking for infectious causes seems appropriate to me. Don't hesitate to check for chronic lyme and co-infections, even if you don't recall a tic bite. Your current doctor may or may not believe in chronic lyme, so you may have to go elsewhere for that.

Our improvements were so slow and gradual, that we weren't really confident about them until several weeks. Some don't get an improvement, and the recommendation from PANDAS physicians network is to change abx after 14 days if there is no improvement (see the 2nd page of this flow chart: https://www.pandasppn.org/flowchart/ ).

I don't know how to judge "what makes sense" when we don't know too much about how the immune system really works for PANS. Maybe your doctor has some theory about the gut on long-term abx - but theories are speculative, the proof is in the pudding. So, if something changed for the worse, then changing something to see an effect makes a kind of sense.

I would think uncommon is the one. I recall Dr. Swedo making this distinction between rare and uncommon, I think in the documentary "My Kid Is Not Crazy", in a portion of the film showing a panel discussion, and some back and forth between Dr. Swedo and a naysayer also on the panel.

Our child has been on doxy for ehrlichiosis, and he seemed to be ok on it. Of course, every child is different. You could try typing doxy or doxycycline in the search box at the top right (once you are in this group), and you should get a lot of past experience about it. I am curious, was this your first lyme test, or a repeat? Your LLMD should know that for a long-term case as you describe (5 years with lyme?) doxy alone may not be enough to eradicate, because of the cyst (and another) form that lyme can hide from abx. I presume he has some other things in the mix as well?

They mentioned the documentary "My Kid is Not Crazy".

I have not heard of Erythromycin, but if it were me, I would go along with it and see if it happens to help any PANS symptoms. Skin rashes of various types are quite common among PANS children. I understand PANS to be triggered by many infections, (e.g. lyme, see https://www.youtube.com/watch?v=qDuxlDWMgso ). So, I believe that it is possible to have, for example, PANS that is caused by bartonella. Bartonella as a trigger, PANS as a kind of auto-immune reaction that affects also the brain.

I have no experience/knowledge with the oxycodone and Tylenol, but may I ask - has he flared since the operation on Monday? Was he on abx pre or post?

I agree with MomWithOCDSon that ERP when in the worst of PANS/PANDAS symptoms not only doesn't work, but is counter-productive. It certainly has helped some people with OCD, so it might still be helpful when he is not as anxious - but that is not when you need the help the most. I am also sure that some ERP practioners will disagree with this kind of advice and point to very severe cases that they have helped. But, they might be different if they don't have the PANS/PANDAS trigger.

As counterintuitive as it might seem, it is possible that the abx will help the food aversion. You can only try and see.

I am only familiar with the Anti Strepptolysin number (sometimes called ASO). It is not sky high, only a little high - indicating recent strep infection. You won't know whether the infection is ramping up, or cooling down unless you do another test (not too far apart from this one). Dr. T. will certainly know what to do (if anything) about the others.

There are some cases of PANS patients reporting increased symptoms with vitamin D (possibly for the reason jan251 mentions, I am not sure). So you might want to research that, and then even so, start low and go slow. I think your skepticism is good, but you also have good counter points for giving it a try. By the way, I searched Coimbra in this group, and got only your post as a hit, so looks like no-one has reported on it here to date. I am curious - do feel that you got lyme (read that in another post of yours) at the beginning of your (undiagnosed) PANS, or do you think you picked that up later and it just made it all worse? I know you only tested for it 2 years ago, but do you (or your LLMD) think you've had it for a very long time? How is the lyme battle going, are you winning?

That is interesting. I believe that most PANS/PANDAS doctors will believe that the disorder has an autoimmune component, but it all got kicked off by an underlying infection, and is re-kicked and re-started by subsequent infections. But there is at least one doctor (Dr. K. in Chicago) that has said that in the tough cases, abx fails in the end. So, if this doctor is willing to help, and believes only steroids or IVIG will do the trick, why not go for the IVIG (if you are covered/can afford it)? It might be a semi-permanent cure (longer term than the steroids). Those PANS/PANDAS patients that have done IVIG sometimes have it all spoiled by a subsequent infection, so while you have the IVIG getting lined up, can you still chase the idea of getting a prophylactic abx with another doctor?

Thanks for posting progress. So sorry that no-one replied to your original post. Certainly steroids help some, and not others. You can type steroids in the search box near the top right to read about other folk's experiences. Make sure that you are in this group before you type into the search box. Our child is similar to yours, in that we had an initial flare at age 6 that went away on its own after several months. But then the next one was really severe. Ours never responded to ibuprofen or steroids, however. At least your neuro recognized the brain inflammation. They often don't take the time to dig deeper. If you find that your neuro dismisses PANS or PANDAS, he might be amenable to some convincing if he knows some of the big names that have blazed the path (i.e. Dr. James Leckman). I typically don't recommend trying to convince a doctor this (much simpler to just get another one), but he might be different on account of his openness with recognizing the brain inflammation. If you want some more info on Dr. Leckman, let me know. He is a giant in the field, and was initially on the other side (opposing PANDAS as a real entity), and then he switched sides.

Following on what Eliself syas, the list of symptoms for PANS and PANDAS can be found here: http://www.pandasnetwork.org/understanding-pandaspans/symptoms/ and in other places on that same site.

Experiences vary, but my feeling is that unless you catch it right away in treatment (i.e. within days of onset), the best you can do (until possibly puberty) is reduce symptoms. I hate to say that people don't typically get back to 100%, but some do talk about getting to 90% with treatment. Then also, the kids can regress again in a flare, and then get better again. It also seems that as the disorder ages in the child, it can morph (become different in symptoms).

Sounds (from this distance) like tics. My son had plenty of weird (choreiform) movements, but no real tics (in my opinion). Can you find a PANDAS/PANS expert in your area? There is a list here: http://www.pandasnetwork.org/research-resources/us-providers/ Even if the symptoms seem tolerable now, I would (if doing it again) start down this road of getting a specialist lined up right away, rather than wait and second-guess.

So sorry about your situation. I have no connections in that area, but you might also try to see if any of the practioners in North Carolina have sites or facebook groups where patients connect. Here is a list of some providers: http://www.pandasnetwork.org/research-resources/us-providers/#NORTH CAROLINA

We also got slightly worse on probiotics (well tested, on and off many times), and suspected worse on NAC (just from one try). You might try cutting some of the supplements out one by one and see any of them are a problem. Interactions can also get really complicated when there are so many pills.

I believe it is. The false negative rates for swabs (i.e. test says negative, but you are actually positive in the throat) could be as high as around 30%, especially if the swabber is not a pro. The false positive rate (test says its positive, but he really doesn't have it) is much much lower (around 5% or so - depends on method, and user), so one positive in the presence of a couple of negatives means the positive should rule. I don't know what the false test rates are for the culture, but undoubtedly the false negatives are higher than the false positives, because many different mistakes can lead to a negative, whereas most everything has to be right for the positive. You can buy a strep kit, and swab whenever you are most suspicious. There are other places to swab (perianal strep is common), so could be negative for that reason (that is outside the false positive rate above).

Unfortunately, there is no clear definitive biomarker for PANDAS, so blood results are just a guideline. Our son was also always a bit more anxious that our other kids, but we got a PANS diagnosis primarily because of an extreme ramp up of OCD symptoms after some (unknown) flu-like sickness when he was 9. He actually had a bout of severe OCD at 6, that mostly went away months later. We wish we had been tuned into PANDAS/PANS back then (because if caught early, it should be better), but we didn't learn until he was 9. So, you are in better shape than we are. If unsure, Dr. T. might weigh the risk of giving him longer-than-normal trial of abx vs. having PANDAS untreated. Catching this early is a good thing. Having gone through all that we have, I would be more anxious about untreated PANDAS than about wasting the time and money you have spent on a possible dead end.