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bobh

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Everything posted by bobh

  1. 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!
  2. 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).
  3. 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.
  4. 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
  5. New here

    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.
  6. New Tic

    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.
  7. Possibly PANDAS?

    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.
  8. Possibly PANDAS?

    Great news, for both of these cases. Priscilla, we feel that for us, puberty itself made the most difference, more than abx, supplements and such. But, there are also some that get dramatically worse at puberty.
  9. I interpreted Dr. T. to mean Dr. Trifiletti, of New Jersey.
  10. We have videos - they are very scary for parents. His body got mostly stiff, with mostly his legs twitching, and he would tend to slowly slide off the couch onto the floor (still with a stiff trunk),. We would move things out of the way. He could turn to look at us (hence, not a real seizure), eyes wide and pupils dilated, but couldn't talk. By the time we finally got help, they had reduced in frequency (1 to 3 a day went to a few times a week, and they got shorter in length). We were not on any psych meds at that time. An SSRI was suggested, but we didn't take it.
  11. Our son did have some catatonic-like symptoms for several months, but none of the doctors that saw the videos labeled it as such. But then again, the only diagnosis we did get for it was 'psychogenic seizures", and that was so off, so (to me), the fact that they didn't label it catatonic means very little.
  12. Can you help me solve this problem?

    Take heart. My wife and I have been there too. If the child is young, it may be very distressing to see a parent in distress, so when I was about to burst into tears, I would tag team my wife into the scene, and go have a good bawl somewhere out of earshot. One fortunate thing, is that in time, the child seems to forget the worst episodes. I think going along with that natural defense mechanism in the short term is a good approach - if you want, you can talk about it all when she is 21, and (highly likely) much better. It definitely seems to be a common experience that a child can hold it together in the company of strangers, and then let loose at home. Don't let this convince you that the disorder is purely psychological. I think of it as a testament to mind over matter (in this case, "matter" being the anti-neural antibodies).
  13. Watch out with probiotics. I used to think our child's reaction was very rare, but the more stories I heard, the more I realize that PANS kids getting worse on probiotics does not seem to be that rare. After being on various probiotics for about 2 years, I got suspicious when we accidentally missed some doses (I thought the child might be better). Then I did qualitative measurements (how much soap he used daily, which I had been monitoring for a while anyway) with him on, off , on and back off again (when it is just one on and off, it might be co-incidentally something else). With a little work, I showed that he was quantifiably worse on the probiotics. We did this with both gutpro and culturelle - both made him worse, not too dramatically, but statistically noticeably. One explanation might be SIBO (Small Intestine Bacterial overgrowth) - if that is a trigger, then probiotics could make that worse.
  14. Can you help me solve this problem?

    I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
  15. One thing you want to watch out for, is whether the child's symptoms (including in the future, whenever things change) are at least in part caused by SIBO (Small Intestine Bacterial Overgrowth). I have a suspicion that some of those that get worse on many different probiotics (and there are lots) may have SIBO. We never tested for SIBO, but we definitely got worse on a number of probiotics, including gutpro and culturelle, for what its worth.
  16. Oh my, your story is so scary, because our son also had his first episode at age 6, and now (at 14) seems to be 85-90% good, with some residual anxiety from time to time. We do think of the anxiety as a PANS symptom, so for example when he recently became more anxious, we put him back on a supplement that we found had previously helped . Thank-you for sharing this story - it really is important for us all to be on the lookout for recurrent symptoms when our children are young adults.
  17. You are right to say that not all have symptoms of strep, and PANDAS/PANS kids especially so. A typical MD wouldn't prescribe abx on the basis of a single ASOT reading, even if it is high (as yours is). It could be on the way down, so they would want to know that (with a second reading). A swab is easier to do, and considered by most to be accurate. But it isn't, because not all swabs are done well, and sometimes the strep can be elsewhere (perianal, or in the sinuses or other biofilm), and a throat swab won't catch those. If it were my kid, I would be pushing for abx, but you are going to get resistance from typical (non-PANS) doctors per the above.
  18. Empower Plus

    Near the bottom of this thread: https://latitudes.org/forums/topic/15854-pandas-15/?tab=comments#comment-127857 there is a comment about doing well on EMpower (if that is the same thing you are asking about).
  19. Mitochondrial deficiency

    Hiding supplement flavours is not something I have had experience with - I'm sorry, it sounds like a tough problem. There is a just little bit of discussion at the bottom of this thread: https://latitudes.org/forums/topic/12438-cod-liver-oil-in-am-or-just-a-good-day/?tab=comments#comment-103886 If you search mitochondrial once you are in this group, you will find some discussion on that.
  20. I am not knowledgeable on mast or methylation, but I see that there are 105 hits on "mast" if you type it in the search dialogue at the top right, once you are in this group. I am sure methylation will also have lots of discussion, too.
  21. zoloft - good/bad?

    This link gives the full paper, as well as an option to download the .pdf: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype Reply if you would like to discuss it.
  22. pandasnetwork.org is a good resource for all things PANDAS (and PANS) related. You can find a list of PANDAS-aware doctors in your state on that site as well. I am sorry to say that walking into a typical doctor's office and asking them to consider PANDAS won't typically work well. If that is your only recourse in the short term, you could instead pose the question "Could you please consider or rule out encephalitis?" That has a better chance of getting you a little bit farther down the road (possibly with some blood work), while you line up a PANDAS doctor. Do you have an option to keep him home? I am thinking only of the suffering and effect of trauma. The separation anxiety is not something he can will away or control. Is your partner on board with exploring PANDAS? It may be important to your relationship that both of you are onside; this has sometimes driven a wedge between couples, when one things the other is pandering/spoiling the child.
  23. Oh, this is not the survey that I thought you meant. The other one was smaller, but published formally in a peer-reviewed journal. Thanks for pointing it out - sorry I took so long to get back here. I see the results on page 15. I still think that there is a significant issue with selection bias. The people whose kids got better with puberty years ago are very likely not included in the right proportion in this survey, simply because most have moved on, and are no longer in these groups (and that explains why it took me so long to get back here!). The ones that are still struggling with post-puberty kids are still here, and much more likely to be responding to the survey. This kind of survey should have some interpretation/discussion around it. In some cases, you can answer more than one answer to a question, so the percentages calculated are also not really right. The ~60% male and ~40% female has been shown in other surveys as well, so it sounds like a fairly reliable number.
  24. zoloft - good/bad?

    We started Zoloft at an extremely low dose (2.5mg, that's right, that's not a typo for 25). It had to be specially compounded, but we did it because of Dr. Tanya Murphy's paper on activiation for even very low SSRI's. We had a dramatic and immediate positive benefit from that low dose, and we never went higher than 5mg.
  25. Adult with untreated PANDAS?

    Interesting to see a German interpretation of lyme. Typically, you need other positive bands (3 total according to IGenex, 5 total according to the CDC) to have serologically indicated lyme (you have only one band that is positive, #39). But some get a clinic diagnosis of lyme (meaning, from symptoms only, regardless of these bands) - as is hinted in your translation. Others argue that these bands may be negative if lyme has been in the body for a long time. I think that it would be difficult to know for sure that you haven't been bitten by a tick when you were young, and then if it was long ago, then it may not show in these blood tests. If you are worried and want to chase this further, there is a German lab called Armin, that does a different type of test for lyme.
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