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MomWithOCDSon

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MomWithOCDSon last won the day on November 27 2017

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About MomWithOCDSon

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    Female
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    Midwest
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    All things PANDAS, OCD, travel, pets, education

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  1. Antibiotics during flare question

    There are studies that speak to other properties of various antibiotics. For instance, beta-lactam antibiotics are thought to have glutamate-modulating properties, and another class (cephalasporins, maybe? my memory isn't what it used to be) are anti-inflammatory. And if your kid is taking Augmentin, for instance, that clavulanic acid component (Augmentin being amoxicillin plus clauvanate) is thought to have some neuro-protective characteristics of its own. There are multiple, older threads here about various antibiotic characteristics, and a Google search will give you some answers, too.
  2. I'm guessing that "Just Ranting" section got deleted because it wasn't being used much. Or perhaps someone took to ranting about a specific doctor or caregiver, and it wasn't viewed as constructive or appropriate? Whatever the case, though I'm not a moderator, I'd say rant away, if feeding off some of that negative energy will help you feel better! We all need to blow off some steam now and again!
  3. New to PANDAS, extremely high DNAse B

    How old is your son? Does he have an ASD or Asperger's diagnosis? My son had certain ASD characteristics beginning about first grade, also, but nobody actually thought they were pervasive enough to "qualify" for ASD. He also developed OCD at about age 6, but we couldn't get anyone to take us seriously with respect to PANDAS. Fast-forward to age 12 when we finally succeed in getting him tested, and not unlike you, his titers were off the charts in terms of the "normal" lab range: 770, in our case. Glad you've got some ready response! If you can spare a few minutes each day, you might try keeping a journal about your son's behaviors as it could be interesting what you might find he leaves behind and what new skills he may demonstrate as the abx go to work! Good luck!
  4. Desperate for Sleep

    Mountainmom -- That's interesting about the antibiotics. From what to what (the switch, I mean), if I may ask? Did your doctor offer an explanation? Was it that the first antibiotic was thought to be ineffective over all and that was contributing to the sleeping problem, or is it that the new antibiotic(s) have properties that are better targeted toward sleep/rest? Glad you found a solution!
  5. Duration of antibiotics?

    My DS was older than your DD when we started PANDAS treatment but, yes, I think you'll find many, many anecdotes of longer courses of antibiotics being necessary for PANDAs; the reasoning is not entirely scientifically addressed as of yet, but there are a lot of theories out there: strep or other bacteria still present in the body and thus prolonging the autoimmune response, molecular mimicry tricking the immune system into a continued response even though the bacteria has been eradicated (immune dysfunction), other properties of antibiotics that support our children's healing besides eradicating bacteria (anti-inflammatory, glutamate modulating, etc.). In the end, most of us use a 30-day course, at a minimum; some of us, ultimately, have kept our kids on antibiotics for prolonged terms; mine took 1,000 mg. of Augmentin XR twice daily for almost 2 years before we were able to successfully wean him off without his PANDAS behaviors returning. In conference forums and exchanges with the experts in the field, while they prefer shorter courses of antibiotics over longer ones, there is some evolution of the thinking along these lines. A few years ago, Dr. Swedo (the NIMH researcher who "discovered" PANDAS) allowed that she could support a longer course of antibiotics if necessary. All told, the primary concern was not antibiotic resistance but c-difficile, a detrimental gut flora that can take over when antibiotics kill off all the beneficial bacteria and is extremely hard to eradicate once it takes up residence. So keeping your kid's gut populated with good flora, replacing the die-off caused by the antibiotics, is key, during antibiotic treatment. Good luck!
  6. Desperate for Sleep

    Only two thoughts outside what you've been trying: 1) time-release melatonin (maybe it would help him stay asleep for longer stints; and 2) valerian root? Valerian stinks like dirty sweat socks, but it really helped us at points.
  7. PANDAS and Sinus Surgery

    MarcyJ -- You might try reaching out to a forum member who goes by the name Kimballot. Here's a more recent thread posted by Kim with a summation of the family story: Kim's kid underwent sinus surgery and, as I recall, it kicked off a road to pretty much full recovery. Probably have a lot of information and experience to share along these lines. All the best!
  8. Here we go again...

    Bttrfly1 -- I'm neither a doctor nor a scientist, but I would venture that the tendency for multiple kids in a family to be susceptible to PANDAs/PANs is part and parcel of one or both of the following inheritable conditions: 1) the constitution of one's immune system; and/or 2) one's methylation cycle and any mutations that potentially impact one's inherent ability to properly process nutrients, maintain neurotransmitter balance and control the body's inflammatory responses. The methylation cycle and all of the genetic code and mutations stuff is way over my head, but you can find multiple threads with some good information here on the forum. I'm sure the prospect of a second kid with PANDAs/PANs challenges is a daunting one, but it might help to remember that susceptibility, and even genetic mutations, don't necessarily result in gene expression or manifestation. And forewarned can be forearmed, so there are likely some steps you could take during your pregnancy and your new child's early months/years that might curtail or even potentially prevent any future expression of PANDAs/PANs issues. I'm not sure what part of the country you're in, but Dr. Kenneth Bock in New York State runs a medical practice which is aimed at promoting the healthiest possible in-utero environment and nutritional and health practices for infants and children that result in strong, healthy, "neurotypical" immune systems. If his practice is an option for you, it might be something to consider. I've heard him speak and read his book (Curing the New Childhood Epidemics: Allergies, Asthma, ADHD and Autism), and he's quite impressive. All the best to you!
  9. When will antibiotics start working?

    In my experience, the fact that you're seeing palpable improvements, even though they might not be the larger ones you'd hoped for, speaks to the efficacy of the antibiotics. We saw some improvements within a few days ourselves. But it may take longer for the impulse control and meltdown issues to die down, especially given her age and developmental stage; I mean, most "normal" 4-year-olds will meltdown and/or participate in impulsive acts at inappropriate times, so to be contending with that still, especially following an atypical outing (neurology appointment) that was likely stressful for her, isn't surprising to me. We found that our DS (though he was older than your DD -- 12 at the time PANDAS came on full bore) struggled with meltdowns and age-inappropriate behaviors most when he was stressed by an activity or outing that stood out from the daily routine, asked something of him (talking to a stranger, talking to a doctor) that was hard for him, etc. And, unfortunately, that behavior carried over for a bit, gradually dissipating as he got healthier and healthier. I found it helpful to keep a journal during his treatment so that I could keep track of improvements, set-backs, positive things that he'd been able to do before that he'd not done since the PANDAS, but then we saw return bit by bit over time, challenges that he had after diagnosis that he was able to shed over time, etc. It helped me be a little more objective about his progress. Plus, PANDAS healing has something of a notorious "saw-tooth" pattern for many kids (2 steps forward, 1 step back), so tracking things can help you identify patterns, if there are any. All the best!
  10. Probiotics recommendation

    Hmmm. Perhaps the improved results (in terms of OCD) on Renew Life had less to do with the brand and more to do with the strains of bacteria in the supplement? I know there is literature out there that reports on at least one study with respect to different strains being more and/or less beneficial for various issues, but I can't seem to lay my hands on it right now. I know Klaire Labs is highly respected, so I wonder if you could "match" your former Renew Life formula with one of their products? We also like Jarrow Sachromycces Boulardi (same strain as is in Florastor but less expensive than the Florastor brand name) and, believe it or not, Culturelle, which is readily accessible and affordable via most drug stores. It's purely lactobacillus GG, which is supposed to be good for combatting anxiety and depression (and hence tends to be pretty good for addressing OCD, also). Good luck!
  11. School

    What you say is very true. But some other "conditions" like "standard OCD" also have periods during which the behaviors or more or less pervasive than others, so a PANDAs or PANs presentation may not be all that atypical to at least someone in your school (most likely the psychologist, if there is one). And I know all schools are different, but we found that, for the most part, they were willing to "roll" with our DS's capabilities at different points in time -- asking more when he was clearly capable of more, but easing up when he would have a tough day or even a tough week. I know we were blessed with our school and the advocates our DS was fortunate to have within, as I've heard some much more difficult stories from other families. But I guess I'd encourage you to shoot for a positive outcome and maybe hone in on one or two teachers or administrators in your son's school that seem to "get him" maybe just a little more than others, and see if they can help you advocate for the right accommodations and approach for him. All the best!
  12. tonsillecomy - oxy or tylenol

    No experience or words of advice to offer, Smarty...just wanted to say "Hi!" and glad to hear (knock on wood) that things appear to be going well! You've earned it! Happy holidays!
  13. School

    My DS was older than yours by the time his PANDAS was such that it really made school an issue, but I can certainly relate to what you're currently experiencing as my DS first got a "regular OCD" diagnosis at the age of 6, just a few months into his first grade year. Do you have a therapist involved in your DS's overall treatment plan at this point? Obviously, we had one because we couldn't get anyone to sign on to PANDAS at the time, let alone treat it, but he was a good resource for in-school and at-home strategies for addressing our DS's OCD (mostly perfectionism, which led to either over-erasing or avoiding writing down anything at all, for fear he would get it "wrong" somehow) and attentiveness issues. Mostly, at the time, we made appointments with DS's teacher(s) and the school psychologist (maybe social worker, too, if there is one), gave them some material about his behaviors and what they might see (you could add "during a flare"), and any suggestions we might have for accommodating him reasonably in the standard classroom but not at the expense or disruption of the other students. It appears your teacher is doing that with her timer tactic, though you may be right that it might increase his anxiety and, ultimately, he may still fail to "cooperate" because that OCD fear of doing something wrong will typically outweigh the fear of displeasing the teacher, in our experience, anyway. It would probably be helpful to get the school psychologist and/or social worker involved, if possible, because they can help the teacher with appropriate strategies in the classroom, too; yours is likely not the first kid who needs some accommodations that they've come across, with or without a PANDAS diagnosis. They might wind up suggesting a 504 Plan which would be something to consider. I would also suggest the book "Students with OCD: A Handbook for School Personnel," by Gail B. Adams, ED.D. I bought copies for myself and for my DS's administrator and psychologist when it first came out. In remembering that the school is not equipped to "treat" PANDAS or OCD, but that their goal is to give your kid the best education possible, before, during and after illness or a flare, giving them tools to meet the primary behavior set in the school setting, IMHO, is really all that we can ask of these folks. The ideas and suggested accommodations in this book are really, really helpful, in our experience. And because they come from a "third party," we didn't get a lot of pushback as though we were advocating for something that was inappropriately lenient or anything. In the end, it might be that your DS needs to have auditory assessments, rather than written ones, during a flare so that he's not required to write things down on paper for a period. He might need some alternative assignments, depending on what's at hand; for instance, my DS HATED "coloring" as his small motor skills were never up to par when he was sick and that messed with his perfectionism (staying within lines), plus, he quite honestly thought that the very act of "coloring" was a waste of his time; some kids love it, he hated it. So the teacher came up with some other options for him that were more "spatial" and less triggering for him. We were also able to get them to eliminate some of the "busy work" -- tasks and/or assignments of nominal value that were more "crowd control" and "quiet time" undertakings than they were teaching of basic concepts. So, in other words, if he could demonstrate his mastery of the math by doing 5 problems instead of 10 (many of which were repetitious), then he was awarded grading in accordance with the reduced quantity of problems he was assigned. Good luck to you!
  14. 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!
  15. 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!
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