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MomWithOCDSon last won the day on February 16

MomWithOCDSon had the most liked content!


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. New member and mystery illness

    Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
  2. Ela -- Sorry to say, it isn't just Wisconsin, nor is it limited to more rural areas. We're in the Chicago suburbs, and it took us 6 years for anyone to take us seriously regarding PANDAs. The issue here is that the area's leading pediatric immunologist and infectious disease expert is a virulent PANDAS/PANs naysayer, and he's heading up our teaching hospital programs, as well. So every pediatrician who comes through this prominent program tends to come with the same attitude: that PANDAS/PANs is a condition "made up" by the internet and parents who simply refuse to accept that their children have, overnight, become mental disaster zones. We finally got help and some relief when, at 12, our DS fell off the cliff with respect to his mental and emotional state. "Saving Sammy" had just come out in the bookstores, and after I read it and realized my DS was practically a carbon-copy of Sammy, I took a copy of the book to DS's regular pediatrician and begged her to help us. She'd known DS for many years, and I think she realized that who he appeared to be at that point bore little resemblance to the sweet, calm, inquisitive boy he'd been before. She remained skeptical about PANDAS/PANs but agreed to provide us with a 30-day antibiotic trial based on Sammy's protocol and her oath to "do no harm," which she felt trying antibiotics might do nothing, but it wouldn't harm our son. When our son began to improve almost instantaneously (within 48 hours), I started keeping her abreast of his improvements via "snail-mail" notes (she didn't have email, and she wasn't insistent that we bring him in regularly). And because he continued to improve with abx and seemed to initially regress when we ceased them, she continued to renew our prescription for quite some time. Now, the rest is history. Our DS had also been under the care of a psychiatrist since the age of 7 when the OCD he'd first displayed at 6 stopped responding to CBT alone, we couldn't get anyone to take PANDAs seriously, and he never showed classic signs of a strep infection. So we continued with therapy and psychiatric supports while he was on abx therapy for the medical issues, and he continued to improve. We switched to a psychiatrist who, while not willing to "treat" PANDAS specifically as she felt that it was a medical condition which should be addressed by a pediatrician or other medical specialist, accepts PANDAS as a viable diagnosis and thus is mindful as to other interventions she recommends alongside PANDAs treatments. Healing was not instantaneous and the mental/emotional challenges continued for some time, also, perhaps because he went so long without adequate treatment for the underlying autoimmune issues. That's one reason we stuck with the psych and therapy, along with the medical interventions; we wanted him to have as much support as possible so that, hopefully, he could climb out of the hole quicker and with less overall stress. But he improved steadily and returned to being not just functional, but happy.. Hang in there, and keep dialing for dollars. There are other folks here who have or still do live in Wisconsin. The International Obsessive Compulsive Foundation web site has a "Find Help" page where you can search for geographically proximate professionals to help you. I found our psych on this site; I called every one of them and interviewed them about their knowledge and acceptance of PANDAS/PANs before I even considered making an appointment. And consider enlisting a current caregiver/doctor for help; someone who's known your son for many years, one would think, could see that he has fallen victim to something atypical, and they might be willing to step outside their comfort zone like our pediatrician did and give some help, even if only temporarily while you search for other options. All the best to you!
  3. Sensory Processing or PANDAs?

    Kelly -- I suspect it is a combination of both...an unfortunate marriage of a genetic susceptibility and the PANDAS-related inflammatory response. And it may not be a "flare" so much as a continuation of the original PANDAs/PANS immune onslaught; many of us find that a "typical" or shorter course of antibiotics is insufficient for fully addressing our kids' conditions, so a two-week course may not have fully addressed the "animal" that is PANDAS/PANs. Our DS, too, had some mild sensory issues prior to a the full-blown PANDAs episode that sent us into a tailspin. Once the PANDAs hit full force, we had him professionally evaluated and as with most of his behavior set, the results came back "borderline." During PANDAs, he was alternately identified as "borderline" a number of things: OCD, Asperger's, PDD-NOS, Sensory Processing Disorder. You name it, the poor kid, at one point in time or another, wore a label for it. What I can tell you is that, with the conclusion of effective PANDAs treatment, the sensory and social issues resolved 100%. One doctor even took steps to revise his file to remove the former ASD notation he'd made there. I would say, however, that I don't think you are wasting any effort in giving her access to OT; I think it will only help her as she heals and enforce positive behaviors and coping strategies that will stand her in good stead going forward. All the best!
  4. C Diff or Stomach Virus

    The only person I've ever personally known with c-diff presented not only with diarrhea and malaise, but he was sick, sick, SICK! High fever, total lack of appetite, etc. I would try adding another good quality probiotic, maybe a multi-strain one (Culturelle is a single organism) and see if that helps balance out his gut a bit more. I'd also try adding Florastor (or another brand of sachrommyces boulardi -- Jarrow makes a good one) as it is very effective against diarrhea and is also identified as a beneficial yeast which can be good for "crowding out" the troublesome invaders (like c-diff and candida) that tend to take over when antibiotics kill off much of the beneficial bacterium and yeast. All that said, you know your kid, so I would trust my gut, too. If you really think its possible he's developed c-diff, I'd get him tested. That's not something to mess around with. Good luck!
  5. 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.
  6. 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!
  7. 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!
  8. 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!
  9. 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!
  10. 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.
  11. 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!
  12. 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!
  13. 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!
  14. 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!
  15. 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!