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MomWithOCDSon

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MomWithOCDSon last won the day on July 29

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About MomWithOCDSon

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    All things PANDAS, OCD, travel, pets, education

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  1. Andrea -- PANDAS struck us with full force when my DS was in 6th grade also, though it was toward the end of the year, bleeding into the beginning of 7th grade as well, unfortunately. Sorry you're on this path, but I'm so pleased that you got a quick diagnosis and treatment. Hang in there with the Augmentin; hopefully you'll see some positive impacts soon. You might also want to look into either an IEP or home schooling with your school, or both, to give your DS some relief in terms of stressors in the school environment while he recovers his physical and mental health. I personally think it's really, really tough for kids at this age because the expectations for "age-appropriate" behaviors are fairly well set by junior high, and under high anxiety, it can be hard for our kids to meet that bar. Much light and healing thoughts headed your way. You're not alone!
  2. I would try sachromycces boulardi or "sach b." You can get it at a pharmacy (usually behind the counter) by the brand name Florastor, or you can get less expensive versions (like one made by Jarrow) at places like The Vitamin Shoppe or Whole Foods. This probiotic strain is a beneficial yeast that is supposed to crowd out bad yeast like Candida and reduce diarrhea, and it is virtually indestructible by antibiotics, which means you don't have to worry so much about dosing it hours apart from antibiotic dosing. Good luck!
  3. Antibiotic side effects!

    Gastro-intestinal distress is a classic, typical response to antibiotics. Though these side effects are likely to diminish over time as your body adjusts, there are some steps you can take to diminish them now. Especially some substantial probiotics. Sachromycces boulardi is especially effective in combatting diarrhea, and regular probiotics during antibiotic treatment will help keep your gut's flora balanced and reduce gas, cramping, etc. Most of us go pretty heavy with them -- up to 200 billion units per day. And don't rely on acidolpholus (ubiquitous in those "Pearls" you can purchase in the grocery and common in many yogurts, kefirs and cheeses, as well) since acidolpholus is one strain of flora that is very susceptible to antibiotics. You'll want to rely, instead, on strains like sach b, lactobacillus (Culturelle), and the bifo strains since they tend to survey antibiotics to a much greater degree. Good luck!
  4. The Jarrow sach b is only 5 billion units/capsule, so we gave him one of those in the morning and one again at night; the same with Culturelle, as the most potent form of that I've been able to find was 10 billion units per capsule. We made up the rest with the Renew Life Ultimate Flora which is actually 100 billion units per capsule. So, in the depths of it all, he was getting slightly more than 200 billion units. We cut back once we stopped the abx. Looking on the web just now, it looks as though Renew Life now actually has a 200 billion unit formulation, so you could cut back on some of the dosing with that. I think it only comes in a powder form, though, which you'd need to mix into some friendly liquid or soft food, like yogurt, pudding or juice.
  5. The mixed probiotic was not specifically doctor-recommended. She recommended the Culturelle, but frankly, she's a fairly conventional, western-trained physician and not really well-versed in or even especially receptive to any "natural," homeopathic or even integrative medical treatments. So I think she mentioned Culturelle due to its ubiquitous nature and availability in the grocery store, etc. We started the mixed-strain based on discussions and experiences posted here on the forum, as combined with the fact that the Renew Life was readily available at our local Vitamin Shoppe and Whole Foods stores, and we could get it in a 60 billion unit single capsule, which helped cut down on the sheer number of pills/capsules DS had to consume in a given day. Also figured that the broader the variety of flora in the gut, the greater likelihood that it would survive the abx, foods, etc. and crowd out the bad stuff -- like candida and c-difficile. It worked for us, but I'm sure everyone's gut biome is highly individualized. All the best!
  6. How Much Probiotic per Day?

    What are you trying to achieve with the probiotic? Is your son taking antibiotics currently? It is probably best to dose probiotics over the course of the day -- or at least some in the morning and some in the evening (maybe at breakfast and again at dinner?) -- so that the gut is consistently repopulated with beneficial flora. Some probiotics are particularly beneficial for certain issues, but a mixed strain is probably ideal if you're not trying to address anything in particular. Lactobacillus gg (Culturelle) is supposed to be good for combatting anxiety and depression. Sachromyces boulardi (Florastor) is good for diarrhea and other GI distress issues. If your son is not taking antibiotics or some other treatment that tends to kill off gut flora, then probably 20 to 50 billion units per day is adequate. If he's on an antibiotic regimen, I would suggest somewhere upwards of 100 to 200 billion units per day, and spaced at least an hour or two apart from the antibiotics. Also just know that one of the most readily available probiotics - acidolpholus (found in yogurt and kefir and some cheeses) -- is susceptible to antibiotics and cannot outlive them. So just mix it up and don't rely on yogurt or any other single source alone, and you should be okay. All the best.
  7. No experience with either specifically for anxiety or OCD, but have used meditation regularly for years to improve mood, reduce "standard levels" of anxiety, etc. It definitely works, but I would encourage anyone starting out to take a class and/or regular classes initially with an expert practitioner so that you can learn the proper way to go about it and build the skill set. As for hypnotherapy, I know some people who swear by it for other purposes (quitting smoking, for instance), but I've not really heard or read of it being especially successful for anxiety or OCD; I suspect that's probably because the anxiety and/or OCD tend to be very strongly (and at least partially genetically) wired. And perhaps the anxiety/OCD competes for the same brain pathways that the hypnosis utilizes? At any rate, assuming you have the means and access to an established and well-referenced specialist in this area, I don't suppose it would harm to try it. Let us know how it goes!
  8. While taking antibiotics, my DS took about 200 billion units daily of mixed probiotics: sach b, Culturelle (lactobacillus gg), and a mixed strain probiotic by Renew Life. I don't believe the sach b contains either dairy or gluten; the brand we used was Jarrow.
  9. My son has PANDAS

    Yes, if inflammation is a significant contributor to PANDAS/PANs behaviors, a steroid "burst" usually results in a reduction of those for a short period; however, it's my understanding that a "burst" is predominantly used as a diagnostic tool to determine if significant inflammation is at play. A somewhat longer course of steroids has been prescribed by some docs for treatment purposes, though we didn't utilize that for treatment ourselves, so I'll have to leave it to others to chime in on that. As for IVIG in Washington State, I'm not sure; there is a list of "doctors who've helped us" among the Pinned Threads at the top of this forum, so perhaps there's a name there in your area. I'm certain there are some in Northern California/the Bay Area that offer IVIG, but again, hopefully some others will chime in here before too long. Good luck!
  10. Staring spells, zoning out

    LIke many of your other symptoms, Hitman, yes, we can relate. And yes, I believe your "zoning out" is PANDAS/PANs related. My son used to do that almost constantly. Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc. There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that. My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him. Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders. Perhaps something like this might be a missing piece of your puzzle? I would pursue glutamate modulation, whether via pharmacological or "natural" routes.
  11. I don't think we saw true weight gain as a result of the abx themselves, but as his health returned and he felt less anxious and more himself, his appetite improved, he slept better, and he spent fewer calories pacing and fidgeting, so our DS gained some weight over his healing period, also. Is it possible you're seeing these contributory results, rather than the gain being directly tied to the abx themselves? As for the bloated tummy, I'm sure you know that abx can cause some GI distress. Are you also giving your DS a good probiotic (ideally, dosed a few hours apart from the abx dosing)? I would especially recommend sachromycces boulardi, or "sach b," which is a good/beneficial yeast that fights off candida and other "bad yeasts" that can build when you take antibiotics and improves upon diarrhea, bloating, gas, etc. You can find it at your pharmacy under the "Florastor" brand name, or at places like the Vitamin Shoppe or Whole Foods under other, less expensive brands like Jarrow. In our DS's case, while he did experience some GI issues early in the abx regimen, over time and with the help of the probiotics, his body adjusted and then there were no more issues in that regard. Hopefully you'll experience something similar.
  12. Life!

    Hitman -- In our DS's case, we found that glutamate dysregulation was definitely a culprit; not sure, frankly, whether it was a side effect of the immune dysfunction/PANDAs, or if it's more directly tied to DS's genetic code, methylation function, etc. At any rate, the NAC, which is readily accessible and inexpensive here in the States, made a big difference for him. It is also thought to be a "biofilm buster," so we credit it with also helping DS and the abx regimen to clear up lingering illness and inflammation in his sinuses. Prior to PANDAS treatment, DS had had constant upper respiratory and breathing issues, but the combination of the abx, NAC and histamine regulation at points, as well (during allergy season, during high stress) seems to have set all of that right on a more sustainable and permanent basis. Re. short term memory loss, we saw that also, and just hold onto the fact that it WILL resolve as your health returns. In fact, at one point, our DS said he sometimes felt like his grandpa, who suffered from Alzheimer's and couldn't hold on to a memory for more than a few seconds toward the end. DS was bewildered by how he couldn't remember if he'd brushed his teeth 10 minutes ago, but he could remember the vacation we took when he was 5 years old. Two supplements that are possibly helpful for that: taurine and zinc. In our experience, it takes longer and consistent application for the impacts of dietary supplementation to take root and be palpable, but they DO help! Glad to hear a little more positivity in your "voice" today and sending you cyber-strength and support! Do something you enjoy today, no matter what!
  13. Life!

    Hitman -- I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported. You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources. It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally." I can say, "Hang in there!" I can say, things WILL get better. But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality. I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find. I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress? I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out: OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality. Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy. All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy. But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness: reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening? Reclaim little pieces of your life, if you can, however small. And then celebrate that return to some functionality, however brief or small a glimpse. That'll give you something to build onto. And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment. I know it's a lot to ask of yourself. Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents. But he still had demands made upon him, and we still set some expectations. Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents. We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself. Not fair. Far from easy. But you can do it! I know you can! Wishing you all the best, and a giant, fighting spirit!
  14. Psychosis or PANDAS/PANS/OCD

    Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped. But I can offer this observation. My DS's primary PANDAS presentation was OCD. When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description. He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him. Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality. He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him. Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again. But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior. I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior? I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves. Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with. I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis. So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose? Chances are there's some inflammation in the mix, at a minimum. I say go for it! All the best to you.
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