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Everything posted by MomWithOCDSon

  1. Caught in a Loop

    Wow, that's a tough one. That sort of "thought OCD" is really hard to address, particularly as our kids get older and better at concealing some of the stuff that goes on in their heads. Chances are, if you adopted a no-tolerance policy and "bumped" him out of that train of thought whenever you caught him doing it, he'd just find ways to conceal it better, leaving you thinking maybe he'd managed to shake it, but instead he's still indulging in it. If anyone else has ERP suggestions for this, I'd be interested in hearing them. I will tell you that we were never especially successful with ERP for this sort of pervasive thought OCD, given as the typical ERP tactic would be to somehow expose them to the fear itself. But how do you expose him to these symptoms that he's so dreading and desensitize him to them when 1) they can be very real, in fact, 2) in the long run, it's probably a good thing that he's sensitive to how he's feeling because it can help him take appropriate steps in the future, and 3) "giving" him, or asking that he pretend that he has, in fact, developed these full-blown symptoms that he fears, I'm not sure will desensitize him to them. I wonder if maybe some sort of PTSD treatment might not be more applicable here, since it seems that's really a good bit of what's going on? The perseverating over it is OCD, but the fear itself is very PTSD like, don't you think? As for him seeking reassurance, my experience with ERP would be that you would be encouraged to withhold that, rather than feeding that monster. Really tough to do. FWIW, when my son became a teenager and we felt we'd pretty much exhausted our ERP techniques and strategies, finding them lacking for, especially, pervasive thought OCD, we moved on to ACT, Acceptance and Commitment Therapy. It basically approaches these intelligent, analytical thinkers with a response that says, that's what you think, but that's just a thought and nothing more than a thought. And it has no more power than a thought such as "There's an apple on the table" unless you GIVE it more power. Accept that you have thoughts, both positive and negative, and commit yourself to prioritizing and acting upon those thoughts that are beneficial to the life you want, and accepting those thoughts you have that are generally less constructive, but giving them no additional power. More nuanced than that, of course, but that's more or less what I carry with me from our ACT experience. And, in the end, it did help my DS. Sorry not more help, but hope you find some relief soon!
  2. Cause of uptick in symptoms?

    Unfortunately, I think that with our kids, particularly once the autoimmune reaction is set off to the extent that we discover PANDAS/PANs to begin with, any number of things can trigger an "uptick" or a flare: allergies, stresses, lack of sleep, viruses, bacterial infections, etc. From our experience and reading through some of the research, my understanding (and theory) goes something like this: autoimmune response is, at least in part, inflammation. Inflammation, particularly of the blood brain barrier (BBB), can give birth to all sorts of physical and mental responses as an inflamed BBB does not function as it is intended; an inflamed BBB becomes more porous, letting antibodies and other materials in that belong out, and possibly allowing some substances (neurotransmitters like serotonin) out when they should stay in. In our experience, it can take a while to get off that merry-go-round -- to calm things down sufficiently to the extent that the BBB returns to full health and proper function, and the brain is once again insulated against continued antibody onslaught and/or loss of helpful neurotransmitters, etc. So, all that's to say that I would do whatever I could to calm that inflammatory response: ibuprofen, curcumin, Omega's, exercise, regular and proper-length sleep, etc. Between that, the abx and good old-fashioned time, hopefully, things will settle out and get less volatile. Best to you and yours!
  3. what is next best anti-inflammatory?

    DS takes two capsules in the morning, and one in the evening. I, on the other hand, just take one each morning. My histamine isn't as perpetually high as his tends to run, however.
  4. Recovery Time

    I'll offer that the younger the child and the quicker the proper diagnosis and treatment, the quicker the recovery. At least, that's my long-term impression from participating here and other support groups/forums over the last several years. Conversely, in kids who go longer without the "catch" and/or are older by the time PANDAs treatment is made available, the harder it is for them to "snap back." Kind of like a rubber band; newer, tighter ones tend to snap back to their original shape, even if they get stretched out a few times. But older ones lose some of their elasticity over time and can even become brittle so, like bobh said, they might only come back to 90% of their original size/shape or, in the most unfortunate/complex cases, they might even become brittle enough to break. But even with what may appear to be a full or nearly full recovery, I do think you will want to remain mindful and vigilant for subsequent flares. More often than not, they're part of the package for a kid who's immune system is predisposed to dysfunction. Employing prophylactic measures should prevent those from becoming full-on "episodes," but they don't always fully offset the new immune injury. Good luck!
  5. This is what I struggle with....

    I will second bobh as a mom of a kid who first presented with OCD at 6, first "retreated to normal" for about 1.5 years, then had another blip which once again retreated (with therapy and medication) for more than 5 years before it came roaring back at age 12 and was much more intractable and much harder/longer to treat. We could not get any support for PANDAs treatment or diagnosis at 6 or even at 7.5, and had to fight for it tooth and nail at age 12, but at least by that time there was more literature, more support and more medical professionals joining the fray.. I would err on the side of treating a possible case of PANDAs. As our pediatrician at 12 finally reluctantly agreed to give us a longer trial of abx, despite her professional opinion that PANDAs remained an unproven diagnosis, she "took an oath to do no harm, and I don't believe an abx trial will harm him." That was the beginning of my DS's recovery. Sometimes you have to trust your instincts! Moms (and dads) tend to have pretty great ones when it comes to their kids!
  6. what is next best anti-inflammatory?

    We never tried dao histamine blocker, but I can speak in the affirmative with regard to quercitin; really seems to help with really no side effects at all. In fact, DS and I both had been taking it for years (DS is a junior in college now), and when I ran out a few months ago and DS was away at school, I decided to just let it go and stop taking it. After my mold allergy started ramping up, however, and I couldn't get relief from Zyrtec or any other typical OTC measure, I went back to taking quercitin, and within about a week, I had significant relief. Great stuff! We like the "QBC Complex" from SolaRay as it also has Vitamin C and bromelaine, along with the quercitin.
  7. Personally, it sounds to me potentially like another instance of labeling a set of behaviors, rather than digging down into the genesis of the behavior. School refusal and flat out avoidance of stressful (or to be more precise, potentially stressful) activities have been, in our experience, a classic presentation of high anxiety. And if that high anxiety is the result of an autoimmune disorder, then you can slap any label you want on it, but that doesn't change what it is at its root. If UK professionals are treating this "syndrome" to address the behaviors but aren't extending beyond that surface to address the underlying cause, the response is likely to be incomplete and without staying power, IMHO.
  8. PANS - Cognitive Regression & Reading

    Yes! Though my DS was younger than your DD when this particular symptomology struck him. In second grade, he was reading at a 5th grade level before our winter break. Just prior to winter break, he was exposed to strep, and during that two weeks off school, we saw increased anxiety, increased OCD behaviors, etc. He went back to school in January, per usual, but by February we'd been called in to talk to his teacher who had been brought to tears by the fact that he seemed to have "forgotten" everything he'd learned in the first few months of the year, including reading. He now couldn't manage reading AT grade level! As he recovered, yes, his reading ability returned . . . slowly. However, because he was younger at pretty much at the beginning of his reading learning, I found some help in a book titled "Right-Brained Children in a Left-Brained World" by Jeffrey Freed and Laurie Parsons. Because some of my DS's symptomology was an increased "right-brainedness" -- distraction (ADD-like), ASD-type processing, etc., their techniques for using visual learning ("sight words") and memory in reading, rather than phonics and more traditional methods, really helped. In subsequent exacerbations, this reading prohibition would sometimes return, though mostly it was less his forgetting how and more the impact of OCD (feeling as though he had to read and reread and reread because he "missed" something) and distractability (losing his place, losing the plot line, etc.). We met that with one of us reading his material to him initially, and then as he healed we'd trade off (I'd read a chapter aloud and then stay with him while he read a chapter aloud), and finally just be his audience while he read out loud his material in its entirety, until he was well enough to read entirely on his own again. I think using two senses in the reading process (seeing and hearing) by reading out loud helps a little, too.
  9. There are a couple of possible factors (if not infection or immune dysfunction based): 1. SSRI "poop-out" is real, unfortunately; you can find first-person accounts of it in forums and discussion groups all over the world, and I've seen it first hand in family members. That said, just anecdotally, I think some are more prone to it than others. Though the science is still not fully researched or documented, it seems to have something to do with the particular receptors that each SSRI affects; pretty much every SSRI has a different formulation that impacts different receptor sites (whether dopamine, serotonin, 5H-T, norepinephrine transporter receptors, for instance), even though there's typically some crossover among all of them. At any rate, if the receptor sites become unresponsive, which they can do, then the med doesn't work as well. Weight typically has little to do with SSRI dosage. 2. We had a psych (and she's actually somewhat versed in PANDAS/PANS and certainly doesn't dismiss it) note for us that a component of our DS's increased challenges at an older age, as compared to when he was younger, were a factor of the expanding "gap" between what were age-appropriate expectations for behavior and what his jumbled brain could manage for him at the time. It's one thing for a 3 or 4 year old to melt down in public, but when a 12, 14 or even 18 year old can't manage all the stimuli coming in and melts down, it's a whole different animal! So, even if nothing dramatic changes in terms of environment or demands, just the fact that she's getting older and so society, friends, outside world and maybe even you tend to expect more "self-management" of her, that's a kind of pressure all on its own that might result in increased anxiety. Sorry you're continuing to go through this; we've been there (a protracted "story"), so I know how frustrating and demoralizing it can be at points. All I can say is that, in your shoes, I would probably first try to rule out any physical (infection or immune) component to the decline, and once having done that, maybe look into the mental health options available to try and improve the quality of your DD's life (and yours by extension). I don't know if you've considered it, but there are now the genetic testing options available (like Genomind) that hone in on genetics and any mutations that may interfere with the effectiveness of various medications, including SSRIs. That might be one route to pursue, particularly if the others aren't fruitful. All the best to you.
  10. New and needsig advice

    I second bobh's suggestion and would add that, since your DD presents atypically for strep, if the swab comes back negative but she can tolerate a blood draw, I would ask that they test for strep titers (ASO and anti-d-nase b). WIth an atypical presentation, this should be a standard second step with respect to strep, but not all pediatricians will go there without a nudge. Still, you can make the argument, without even mentioning PANDAS/PANs, considering her history. Good luck!
  11. Pandas without tics??

    With the temporal relationship of the onset of the anxiety and a positive strep test, it certainly seems likely that this is PANDAs. And yes, tics are one symptom, but not necessary for a clinical diagnosis. My DS had only OCD and anxiety for the most part; tics only factored in at the height of his worst-ever episode and, even then, I'm not sure that I would've recognized them as tics had it not been for this forum and some of the other families' input here in that regard; they weren't "quick" or "jerky," but more complex, such as dragging his left leg behind him when he walked at times. And yes, to some extent, especially early on, my DS's OCD and anxiety would virtually disappear when he was doing something he enjoyed or was well within his comfort zone. It wasn't until later, when he'd gone untreated for a long time (initially, we couldn't get a positive strep test or locate a medical professional who would acknowledge PANDAs as a viable diagnosis), that the OCD and anxiety became so strong that they pushed out even those activities he enjoyed. I'm glad you've got an appointment with Dr. B; in the meantime, is there any chance you could have the antibiotic prescription for the strep refilled to tide you over until your Dr. B. appointment? If so, I would try that and see how your DS responds . . . see if his anxiety and fright responses fade even further. All the best to you!
  12. PANDAS teen with severe OCD

    Pepper1 -- I find myself wondering if the school he is attending, or some outside professional intervention, is available to him with respect to the OCD? Does he see a psychologist for cognitive behavior therapy or exposure response prevention therapy? Is the school one familiar with OCD/anxiety and appropriate interventions for addressing it? As a mom of a DS for whom PANDAS treatment brought him back from the brink, but for whom anxiety and some OCD behaviors continued to play a role for quite some time -- years -- following PANDAS treatment, I'm a big believer in therapeutic interventions, especially for these older kids who have a better intellectual grasp of their anxieties. Particularly with respect to OCD, therapy, in conjunction with the medical treatment for PANDAS (and anxiety medication, should you deem that appropriate), can really make a very big, positive impact. All the best to you.
  13. Dr. L.'s primary mission is to care for your kid; how, exactly, that care gets paid for is on you. So they don't have much to lose in giving you this advice, and it prioritizes your child's care, if not your financial situation. In the past, BCBS used to recognize IVIG treatment for PANDAS; however, I believe that has been withdrawn in the last couple of years. So whether you apply in advance or attempt to submit for reimbursement after the fact, you are likely to, at a minimum, have a fight on your hands and, at a maximum, be held responsible for all of the costs directly, with no reimbursement whatsoever. The exception may be if your child has a documented immune deficiency. If he/she does, I would go ahead and contact the insurance company in advance as I don't think you'll have anything to lose. Hopefully some others will chime in here with direct, recent experience. All the best to you!
  14. 7 years of PANDAS

    Oh, Ambersmommy! I am so sorry to hear what you've been through and continue to go through. We went through a multi-year PANDAS journey of our own, and I had many, many days when I had your same thoughts. It is so tough, and with these really treatment-resistant cases, the feelings of helplessness and isolation are nearly as devastating and debilitating as the disease itself. I hear you on the destruction of your finances and the lifestyle you once had, too. Are you alone in trying to handle all of this? Do you have family or close friends or some sort of support system (a faith community)? This forum helped me through a LOT over the years, but we are (mostly) distant and not physically there to hold your hand or rub your back or take your DD off your hands for a few hours to give you some respite. Are there any charitable groups or local agencies that could take some of the weight off of your shoulders, if only for brief periods at a time? I won't launch into "have you tried this" or "have you tried that" here, as I don't think that's what you want or need to hear. You feel you've exhausted your resources, it sounds like, so all of my thoughts/suggestions are leaning toward replenishing yourself. I want to tell you not to give up, that there is hope and there may yet be healing, but also that if you empty yourself with no opportunity for refilling or tagging someone else to substitute in for you now and again, that's an unsustainable system. I'm just hoping there's something between surrendering your DD to the state or surrendering your life to terminal dysfunction. Sending much light your way!
  15. Help with meltdowns/mood lability

    My son was older when PANDAs struck him (12), but we still saw lots of meltdowns, mood swings and generally age-inappropriate behavior. I don't know about these being the result of a herx. I attribute my DS's behavior during that period to just feeling overwhelmingly anxious and out of control...his executive functioning was basically nil, so all of the things that had previously come naturally to him and he could do well and with joy, were no longer available to him. That was incredibly distressing and frustrating, so his emotions were constantly taking over and he'd melt into a puddle of dysfunction. I might suggest the following: Eliminate all but the essential activities for a while so that he's not over-stimulated and/or expected to "handle himself" in as many stressful situations, even if they all were fine before; Try using anti-inflammatory and/or calming meds and/or supplements to help his brain "settle down" a little while the abx do their thing (ibuprofen, valerian root, etc.); To the extent possible, build lots of "breaks" into his day to allow him to rest and regroup as managing oneself under this level of stress is very tiring, emotionally, mentally and physically, so he's probably in need of some quiet breaks during which he's not expected to play with others, engage with others, etc.; While you make the preceding accommodations, don't entirely forego your family routine, age-appropriate expectations, etc. Decide what non-negotiables you'll continue to enforce so that he knows there is still structure, support and boundaries even while he heals. It will help him feel safe, secure and less out-of-control in the end. All the best to you, and good luck!
  16. 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!
  17. 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!
  18. 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!
  19. 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.
  20. 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!
  21. 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.
  22. 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!
  23. 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.
  24. 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!