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Everything posted by bobh

  1. Did the headaches exist before going on Zoloft? Although the 50mg is not a high dose by traditional standards, it may be sky-high for some PANS/PANDAS kids. Have a look at this study: https://www.researchgate.net/publication/228785018_Selective_serotonin_reuptake_inhibitor-induced_behavioral_activation_in_the_PANDAS_subtype This talks about symptom activation (which includes irritability), not specifically headaches or not being able to settle down to sleep, so it is not perfectly correlated with your question. But it might be part of the puzzle. Not all PANDAS kids have this kind of activation on even very low doses of SSRI's, it was 14 out of 38 that were very sensitive, so this may or may not apply to your child.
  2. I agree with MomWithOCDSon that autoimmunity could easily explain lingering titres. I have heard that some high readings can stick around longer than a couple of months after supposed infection is over and dealt with - but whether that is a separate thing from the auto-immunity, I don't know. The devil's advocate would mock molecular mimicry, and that mocking would be hard to refute, as it has not often been "captured in the wild" (i.e. been proven in people), and not for PANDAS. Rheumatic heart disease is one related example where is has been shown, however. In other words, the devil's advocate would say "show me" - and as far as I know, this is a theory around PANDAS/PANS, not a well-established certainty.
  3. Interesting site! I can't say anything about IVIG and the age issues, but feel that there are plenty of kids that have outgrown PANS/PANDAS, for example with puberty. Maybe Dr. K. isn't including that possibility with his statement. It seems to be our experience that puberty has made a huge difference that so far, has stuck for about a year.
  4. That low-grade fever and red throat seems like a clue that what he could be fighting caused the flare - if the timing makes sense. A couple of days (and possibly longer) before those fever/throat symptoms could still explain a flare then.
  5. We haven't used Dr. T, but he is certainly renowned. He orders a lot of tests. If you type Trifiletti in the search box (at top right) once you are in the forum (not just a single message thread), it gives (as of today) 323 hits. Some just mention him in passing, but certainly some folks have talked here about their experience with him.
  6. I am so sorry that you had not received a response to this question. I myself didn't happen to notice it over the last week even though I am on briefly a few times a week. Has he changed over this past week? My first thought is that perhaps he has another trigger that he was exposed to at just the right time. How far-fetched that theory is depends on how long you left him on the "re-introduce gluten as a test" before you took him off it the 2nd time. If that was only for a day or two, it almost seems like too much of a co-incidence. It would still be possible, but it is a wild enough co-incidence to put doubt in my mind. Then the other possibility I draw from my pharmacist sister, who says that she often has patients that try a drug (we were talking about SSRI's at the time, so I am not sure how broadly this brush paints), get good improvement from it, then after some time (months, I think), get tired of its side effects and go off for a while. Then, when they want to try it again because of the symptoms, they find it doesn't have the same effect as it did the first time. This is common enough that she hears about it regularly. Who can understand the mechanisms involved in that? If a food has an effect on neurological/mental illness symptoms, then can it act similarly to a drug that has a neuro effect? It seems plausible to me, but like I say, who can explain the details of that kind of interaction? This theory offers no obvious next step.
  7. If it were my child, I would tend to let the pediatrician concentrate on the heart murmer, and I would tend to go elsewhere for a PANS diagnosis and treatment. I am sure that is hard advice to follow, because it seems like it means more work for you. But it is truly what I would do, based on my own experience. If the pediatrician is not already disposed towards checking for PANS/PANDAS, it is typically gargantuan job (I would say in most cases, fruitless) bringing them to actively recognize and treat your child for tics. Finding someone else to help with that I think is actually less frustrating, i.e. less work and especially less time for the child suffering. The first thing your pediatrician would have to learn, is that good strep swabs of the throat are hard to do properly. Imagine telling her that. Then, she would have to be convinced that the swab she did do has a fairly high false positive rate, so could she please do another just to be sure about that. You see the problem here. Then, you would have to convince her to accept the idea of also doing a peri-anal swab (because sometimes it is just there, and not in the throat). I know a strep expert mom - she buys her own swab kits, and she also tests boogers. Then, you want the ASO reading from a blood draw. If all these swabs and the ASO don't turn up any hint of strep exposure, then we go looking for other infectious triggers (i.e. a PANS diagnosis), which can be any kind of virus, mold, allergens (probably not for a February onset) or even (potentially) other things like high heavy metal levels. Sorry for this hard-nosed, straight up talk. But there are tests, and ultimately solutions (yes, the tics can get better with the right treatment) that a typical mainstream doctor or pediatrician won't pursue. It is so heart-breaking, to read about a 2-year old with tics. But you have this going for you: you are looking broadly now, early on, and not just riding various doctors directions for months and even years (like many of us have) before looking beyond. Proper treatment early seems to help.
  8. We had bathing problems in the past, but not for long enough to consider a serious strategy. Not long after, it morphed into the opposite: taking long, long showers until the hot water ran out.
  9. Search "anti inflammatories" once you are in this group. There are more than 10 pages of hits. Some have described turmeric as doing really well.
  10. There are tests, but I found them more expensive than the treatment, so I convinced a prescribing doctor to grant us some nystatin to check it out. The reasoning for this route is that nystatin is quite benign - it doesn't absorb into the blood stream, so no side-effects outside of the gut. If no reaction, you probably haven't got yeast in the gut. A PANS child that gets a a herx on nystatin is very likely dealing with yeast (provided no reaction to nystatin itself, which you would have to research to distinguish it from herx).
  11. If it is not too late, I say "Yes!" to the above. I think even dropping the autoimmune would be appropriate. "Please consider or eliminate the possibility of encephalitis" to keep a doctor with bias against PANS/PANDAS from treating you unfairly.
  12. Sorry that I am so slow to get back. There are several kits available online. I had purchased something called Quidel QuickVue (it was what our local doctors used), but some time ago, it wasn't so available. Someone else that I very much trust on this subject had then purchased a strep swab kit from Innovacon. She did a few tests on both kits and got the same results, FWIW.
  13. What I like about that line above, is that it emphasizes what you directly control - your own reaction to the behavior. A major problem for me was my own frustration. I could regularly see that I was not patient enough. But, if the OCD drives us nuts, it is even worse for the child, and he's just a child - without adult faculties. So intellectually, I always have to tell myself "cut him some slack, it's not really him." What I am talking about is not what behavior is allowed or not in the house, but about our reaction to them, in particular the severity of consequences for behavior that we impose. We shouldn't treat each child identically, but rather according to their needs and abilities. I don't draw a distinction between rages caused by PANS, and "behavior". It's all behavior, I didn't think that I can truly separate the two as long as PANS remains.
  14. Try not to put all your eggs in the basket that belongs to your pediatrician. He may be helpful/onside, or in the worst case, believe the condition to not exist. Actually, that's not the very worst case - that would be the scenario of a poor mom beside herself, and the pediatrician (believing the condition to not exist) calling children's aid. In a couple very rare cases, it has been that bad. Here's hoping it goes the better way ... let us know.
  15. How is it going now - did the steroid improve symptoms as she tapered up? Any lab results back for the other daughter?
  16. Ok. Here are some things I have learned about swabs: - it is easy to not have it well done, and get a false negative, such that if you do it 3 times and get 2 negatives and 1 positive, you need to believe the positive (false negative rate is higher than the false positive rate) - you can have it in your gut, and not at all in your throat - besides swabbing the "other end", some experienced parents have swabbed their kid's boogers, and found it there, even though it's not (detectable) in the throat - you can buy your own swab kit, and do it at home, as many times as you want Finally, some PANDAS/PANS kids also don't register a high ASOT titre (that's the blood test for recent exposure to strep) or have a sore throat, even though they have strep that is causing them a flare. All this makes it hard to figure stuff out, but anyway this is part of what I have learned.
  17. Sorry that I can't answer your questions, as none in my family are adults with PANS. But ... what was the result from the swab?
  18. That is a good question. Our son had ehrlichiosis show up (and not lyme) with Igenex, and we had a doctor at one point offer (then later withdraw the offer) to do a second test. It was hard for him to find that test, but once found, it didn't seem to have the "controversial" two-tier process for lyme tests in my region. So, I don't think the co-infections are necessarily as controversial, but I would imagine that each infection may be more or less so.
  19. So sorry to hear about your struggles. It is heartbreaking. There are plenty of LLMDs in the U.S., but I am in Canada, so don't know them well. Some PANS/PANDAS doctors are pediatricians and won't treat at 18 or above - do you still have time to book a PANDAS/PANS doctor if one is closer/more convenient. They could perhaps also prescribe that abx that worked in the past.
  20. That is good advice above. The recent flu does look like a culprit. Towards understanding and reducing your anxiety, I have found that symptoms can morph quite a bit over time. Brand new things come up that weren't there in the previous year or two, and a behavior that used to be common can completely vanish. This may be different bugs, or possibly, the immune system response changing - who knows.
  21. Techically, if they don't have OCD or tics specifically with strep as a suspected cause, it isn't called PANDAS. But you could still call it PANS, if he has either OCD or restricted eating, and two of 7 other symptoms, per http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/ But, these clinical boxes that they create are specific and sometimes more narrowly defined that is the truth, either because they were first defined with research in mind, or they just didn't know enough about how it worked to include other things that have the same mechanism. That's the way the definitions are - they are not necessarily perfect. Take for example, all the diagnoses that keep piling up ... are they really all correct, and totally independent of each other? No, they likely have the same root cause in common - PANS could explain that (and other symptoms) as one cause.
  22. For us, we had quite a variation of lengths of flares from known triggers. When someone else in the house is sick, he has sometimes only flared for a few days after that person gets better (and he himself did not seem to display the symptoms of that particular bug - but that could be "alternate immune response"). After we finally figured out he had some gum disease (not brushing and flossing well enough), he still remained in flare for a couple of weeks afterwards (after what was already a couple of months of flare). It took weeks to bring his gum problems under control (with mouthwash as well as more regular brushing and flossing).
  23. Our child's onset was severe OCD at age 6. But I can understand that in a 2-year old, OCD (or other PANS symptoms) don't look the same as they do in older kids. I would tend to trust Dr. T's assessment - he has had well over 3,000 cases.
  24. Our PANS son had a significant flare after a teeth cleaning about a year and a half ago, so I would not be surprised if teeth pulling contributed to your daughter's symptoms. Unfortunately, oral prednisone did not seem to do anything for our child. Neither did ibuprofen (sometimes called "the rescue med" - but not good to stay on ibuprofen for the long haul). Have you tried ibuprofen? Probably shouldn't do too many changes at once, but it is something you can try if the steroid doesn't come through. I get the impression that it does for most, just didn't for us.
  25. I have collected answers to the question "does tonsillectomy help" from this forum, and found that most people have reported yes. Those fewer that had very negative experiences tended to be not be on abx before and/or after.
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