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MomWithOCDSon

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MomWithOCDSon last won the day on November 5

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About MomWithOCDSon

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  • Birthday January 31

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    All things PANDAS, OCD, travel, pets, education

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  1. 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.
  2. 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.
  3. 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.
  4. 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!
  5. 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!
  6. I have emailed you previously, but wanted to ask how your son responded to therapy when starting. My son has worked with therapists who specialize in anxiety/OCD and has struggled previously with the ERP portion so we have backed down to ACT therapy with our current therapist. However, my son fails to consistently apply any tools learned to the OCD thoughts. Therefore, I feel like it is misty a waste. How did your son stay engaged in therapy and learn to apply the strategies?  I want him to not be consumed by the compulsions, but he does not seem to have the motivation to work at reducing them.  

  7. 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.
  8. 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!
  9. 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!
  10. 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!
  11. 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!
  12. 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!
  13. 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!
  14. 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.
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