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Everything posted by bobh

  1. 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.
  2. I interpreted Dr. T. to mean Dr. Trifiletti, of New Jersey.
  3. 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.
  4. 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.
  5. 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).
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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).
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. Is there any obvious infection? Do his tonsils look even a little suspicious, how are his sinuses? Have you recently tried ibuprofen (for a limited time, per directions on the bottle) just to take the edge off a flare and maybe get some food into him (if it helps your child - some it doesn't)> Another simple near-term thing you can do (if you can get liquid into him) is baking soda mixed with water. Lyme folks have been using the equivalent in alka selzer for years and reporting some relief from symptoms, and finally now some research has shown how/why this could work for autoimmune diseases: https://www.sciencedaily.com/releases/2018/04/180425093745.htm
  20. I am sorry that you haven't had a response. If the immune boosting supplement really does boost the immune system (that is a hard thing to measure/prove, which is why I say "if"), then it could be that an autoimmunity component of your illness (which I wouldn't be surprised you have) makes you worse. More immune power, could mean more attack of your own body in various ways/places. A second possibility is an allergic reaction to one or more of the supplements. A third possibility is that some of the supplements that may have some anti-bacterial or anti-viral power could give you a herx reaction. Google that or "herxheimer" for more on that. There is a big difference between the first two and the 3rd. The first two are just plain bad, the third has the hope of eventually making you better if you can bear some pain. It may be difficult to distinguish between the 3, but it can be done a lot of the time. I used to think that herxes only lasted about a week, but for some lyme and co-infection patients, it seems like it could be much, much longer (if they are in fact herxes). For some, it's just to hard to bear for several weeks.
  21. Our son's ASO titres were also low, but we still got a PANS diagnosis. PANDAS is a subset of PANS. PANDAS has strep as a trigger, while for PANS, triggers could be other infectious or environmental factors (such as mold). Some PANDAS kids with strep don't show typical symptoms (such as a sore throat) - this is what MomWithOCDSon explained was the case for her son, and Sammy in the book Saving Sammy. So, it could be that you don't have strep and the reading is normal, or if you do have strep, your immune system is not responding to it (as would be the case for strep carriers, I believe). But with PANS, there could be so many other triggers, such as mycoplasma, lyme, mold, etc. I'm afraid that investigating this properly is a long road. It just would have been shorter if your ASO was high.
  22. I am not recalling that conclusion (that puberty doesn't seem to make a difference) from the survey - I better re-read it. Just to be make sure, it is one that involved Dr. Murphy, and had 600+ respondents?
  23. As I understand it, PANS is not typically delusional (unlike many psychotic illnesses, where the patient is often not well-grounded in reality). I recall hearing this in a video clip of Dr. Latimer, where she was emphasizing that those with OCD are well aware that their obsessiveness is not normal or reasonable - but they still can't stop. But despite that, when our son was a his worst, we did have some minor incidences of things that he said that did not wash with our understanding of reality. Others have reported auditory hallucinations as well, but I believe this to be relatively rare.
  24. Yes, it has made the rounds in various groups. There are some that are disappointed with how this paper gives psych meds a similar status to abx for treatment. I look at that as possibly the kind of compromise that is typical of such concensus papers, that is done possibly at the expense of the bleeding edge treatments that are pushing the science forward. What do you think of it?
  25. So sorry that you got no response before your appointment, but ... how did it go, and what is the protocol she is recommending for your child? I don't know her well enough to know; I have only read a few of her papers.
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