thenmama

The votes for PANS seem to be registering for CD/MPI. I just documented the process, so have evidence to dispute the poll results. Not that they matter-- it's a public opinion poll about a medical diagnosis-- who cares what people think! Don't think I'd want my medical issues determined by a blog audience I suspect the reason the Mechtler articles and nonsense polls, etc. keep popping up there is that the small time Batavian is enjoying a substantial spike in site traffic and what it does for their site profile, revenue, and/or their egos. Or there's some sort of Dr CD love fest going on behind the scenes there...

I didn't see it so don't know if it was mentioned, but maybe these girls weren't evaluated by Dr T? He didn't evaluate all of them.

I did see that and it made my blood boil. I made the mistake of reading it before bed last night and then I couldn't sleep. I am sitting here now, mulling possible ways to address this b/c it's a serious problem that has implications well beyond the poor kids in NY. I am thinking of at least a public letter that could be signed by the PANS community. And did you see this? It's like the guy just can't stop... http://www.wgrz.com/video/default.aspx?bctid=1437375433001 Are most of the kids still being seen there as he says? If so, why did only five have MRIs and why do so many others, like the ones who've seen Dr T, say they've never even seen him (some may have seen his minion, but not him-- though he talks about it as if they're all directly in his care). But in the" thank goodness he's now giving us a bit more balance" category, this post on Dr T's findings is now live on Dr Drew AND links to Dr T's statement on PANDAS Network! Hopefully following that link will lead more people to good, accurate info re: PANS.

Yes, especially since all of the girls tested positive for one of the other and a number of them tested positive for both. I also wonder if the same area was hit by both MycoP and Strep in a short time period if that would contribute to the cluster effect of these cases...

Dr CD is upset? Well, typically sociopaths and those with personality disorders have a difficult time handling it when people question or challenge them, or do anything that may make them look bad or incompetent, or might reflect on them in a way that is not how they've determined others should see them. Not that I'm carelessly, hastily dx'ing Dr CD with a psychological illness without trying to really understand and investigate the full complexity of his issues and condition or anything. Just saying if you compare his public persona/how he presents in the media to descriptions of sociopathic personality and various other personality disorders that you could fetch up on Google, well.. there's no need to run a bunch of evaluations and tests to arrive at a correct diagnosis when any reasonably astute person will be able to spot these personality types by simply observing them in brief appearances.

Hi elijomom, Yes, my dd had IVIG back in June, ordered by Dr L and coordinated with our ped rheumatologist and pediatrician so she actually had it here. And yes, she was severely "debilitated" going into the treatment and hadn't been able to function for months; the exacerbation she was in at the time of treatment had begun in October. She had undiagnosed PANS for years before she finally got diagnosed last spring. Hard to say what 100% is or should be, after 9 or so years of undx'd PANS. But from her baseline prior to the exacerbation I'd say she's at least 95% and while it's slower now, the progress continues. She's also made it through some strep exposures (didn't get it herself) and a (mild) viral URI with pretty minor spikes and she immediately calmed right down. She can participate in her academics and social life and pursue her passions and hobbies again-- she has her life back now. So while we're still working on the minor issues that remain, since the IVIG she's back to herself and happy. Ds is about to have a T&A b/c of his very large tonsils and recurrent infections, and he'll be having his first IVIG, too. He's also significantly debilitated and cannot function in regular daily life right now. But, his case is also more complicated b/c he's got strep he can't clear and that sometimes even breaks through on Clindamycin and he has some marked immune deficiencies, etc. He has a whole team of docs now-- peds, ped rheumy, our PANS doc, Immunologist, an ENT, etc.

We chuckled about the silence after that answer, too. Loved Dr T's laconic replies on that front! I don't think Dr Drew really thought that they'd all be working together. I think he's well aware that Mechtler is trash talking and Dr T hasn't gotten into it with him-- he's been a class act. I think he was baiting him to see if he could shake things up a bit. His show is based on differing opinions and controversy, after all, I don't think Dr Conversion Disorder should be working period.

Did anyone see Dr Drew? Sigh. The guy just can't get past Mechtler/Conversion Disorder and the environmental angles. And he gave so little time to what is really going on with these kids. Also, someone needs to let Dr Drew know that PANS doesn't "predispose" kids to the tics/symptoms-- it CAUSES them! And why would he say Dr T needs to collaborate with Mechtler? He's a dangerous lunatic, and his minion McVige just seems vacuous. And to push that issue, the therapy they need (guess b/c he sees his profession at stake), that the docs should be collaborating (Mechtler, etc) and he totally shut down the parents when they were trying to talk about their kids' physical illnesses-- one of the girls had recurrent strep and got her tonsils out b/c of it, the other had mono within the past year-- and Drew defended Dent when the one Mom said she didn't know why Mechtler said he'd seen all of the girls b/c her daughter had never seen him in person-- he said, "Well, he meant his team had seen her..." I'm sure he's just trying to stir *&%#! up for sensationalist TV reasons, but grrr and ugh. Tuning in to this travesty reminded me why I don't watch TV.

Very quick reply b/c I've got to run but wanted to chime in b/c my son has needed to stay on Clinda and every time he was switched off of it he would regress-- big time! In his case, his perianal strep would start to flare up almost immediately-- at the same time as all of the PANS symptoms. It started taking longer for him to rebound when switched back on, with our ped rheumatologist said was normal-- for the on/off pattern to impact a med's effect and the speed/oomph of the response when we restarted it. In the past week or two ds, who'd already been ramping up again following a stomach virus in January, had a PANS explosion. He's still on Clinda. We were puzzled by what was going on til he came to me last Thursday night and told me his bottom felt funny again-- I looked and sure enough-- another strepisode-- on Clindamycin! We went to his ped on Friday and she looked up what abx and abx combos to give for the resistant strep. She added Cephalexin, as well, as a short term solution and our doc team is now coordinating to move ahead quickly with his IVIG and T&A. My ds has an immune deficiency and obviously hasn't cleared his underlying infections, so right now the abx are just supposed to hold him over til his upcoming treatments. But, before we'd uncovered all of that and we were treating for PANS with the abx, he had the same pattern of improvement and regression going on and off the Clindamycin as your son. If the symptoms are returning when an abx is stopped or changed, there's a reason for it that needs to be found and addressed. I second the rec to see a Rheumatologist or Immunologist. We've got one of each on our team, in addition to our PANS specialist, and they're great. TH

Yes, EA Mom, the article originally read Dr Drew and then was changed to read "syndicated television show," I caught that, too. As of yesterday you could still see it in the Google cache, but today it looks like it's been updated. I haven't checked the article again for further RT editing, but its last update was today at 5:22 am-- that could be a server/sitewide update or further changes made.

Hi Hawks, One of my kids is definitely immune deficient. DS, PANS and Immune Deficiency is about to have his first HD IVIG and in his case the docs are anticipating ongoing treatments. In his case that is based on his illnesses and immune deficiencies, so the IVIG will be addressing his recurrent need for "passive immunity," and would be there even if one shot significantly knocked out his PANS symptoms. Our dd doesn't have an immune deficiency dx. So, her HD IVIG was for PANS (this was the one we appealed the insurance decision for coverage for PANS). She responded extraordinarily well to the first treatment and subsequent treatment dose Augmentin and has not needed another IVIG up to this point. In her case, the plan is, and has always been, we'll know what she needs when we know...In other words, her treatment needs are based on her evolving needs, how she responds to individual treatments/meds, how far she gets with them, if she backslides, or if another illnesses warrants another or different treatment. I know there are also PANS docs who believe all PANS kids need multiple HD IVIGs and hopefully a parent who works with one of them will be able to contribute some good info about that for you. I think regardless of which doc you see and which school of thought they fall into, every child's treatment is individualized based on their unique circumstances and needs. HTH

Also-- wondering if you know if with abx treatment should the levels fall and to what extent, or if it is meaningful in terms of chronic vs. past infection if the numbers fall with abx? Curious now b/c I did have that course of Azith in between the first and second labs and the numbers dropped some. Thanks again!

Oooh-- I AM overdue for a trip to the Bay Area-- I may just have to make it in April! Thrilled to see these events coming together! Great work!

Thanks SFMom-- I'll start googling the asthma stuff, and I'll investigate the fungal connection, too. Thinking about it-- I did a short course of Azith a few months ago b/c the kids were flaring and dh had strep so our doc gave me an rx even though I was asymptomatic so we could clear strep from the household. Around the end of that course I had about a week or so of clear sinuses. I just got the lab results by mail this weekend so haven't talked to my doc yet. I'm sure he'll be willing to investigate further for me and sure he'll try a course of abx if I ask.

Looks like it was "authored" by the NY State Dept of Health Press Office staff. The document author shows as dmt06- which from some quick sniffing around looks like looks "Denise Trudeau" email dmt06@health.state.ny.us Now- whether that's really who authored it, or just reflects whose software/system it was authored on or it was pasted into its final draft template, or who inherited the software/system from dmt06, well who knows. NYS DOH doesn't seem big on transparency (unless you count agenda/motives but guessing the transparency there is unintentional). And it doesn't really matter if it was dmt06 or another press office staffer who drafted it-- sure it was assigned and then cleared for release by someone higher up the food chain. It's clearly a product of the Department of Health spin doctors. And since when has the content of cited publications had to uphold what it's being used to support or endorse? Sadly common practice doesn't follow that model-- and sadder still it's like that on all sides-- even some we're inclined to trust/support. Crawling back into my dark cynical hole now... TH

Hi all, Wondering if anyone can answer a quick question for me about my MycoP results. Back in June I had my doc run the same labs my PANS kids were having done. My MycoP IgG at that time was right around 230 (give or take can't remember if it was 232 or 228, through Labcorp). IgM wasn't run that time and the IgG results noted something like values >100 could indicate recent infection. My doc said it might be worth re-testing later-- at least 2-4 weeks out. Well, both kids tested neg for MycoP, we were slammed, and I hadn't seen my Dr for anything after that, so I sort of forgot about it... FFwd to about a week or so ago when I had to see my doc. We ran a repeat MycoP and it's now 161 IgG (IgM run this time and negative- no surprise). I've been having some chronic sinus/allergy-like issues and what seems like an asthma-type condition (which I never had before-- and the blood allergy tests I just had run for seasonal/environmental were all negative). I've had several bronchial illnesses in the past few years-- a couple were pretty tenacious. Wondering if anyone has thoughts about the MycoP results and whether they mean anything--seems like they're still in the fuzzy/equivocal zone per the lab notes and I've read that docs usually read IgG as past exposure. I figured I'd ask here in case there's anything I should know when I go back to my doc. TIA TH

Thanks, Amy! Finding an individual tutor is an idea I keep returning to. One of the concerns I had when I spoke to the Mathnasium person was the "students work independently with supervision and assistance as needed" model. That model (among others) has already failed us so I'm not sure the difference in materials would be enough, especially knowing dd's personality and learning style. Maybe I should consider hiring out for the assessment and see if more formally identifying the gaps/weaknesses would be enough to focus our efforts and get us back on our way. I should probably know better than to expect standard/commercial tutoring services to be a good fit for my kids who are not cut out for standardized anything-- we are square peg/round hole extremists TH

Thanks for sharing your thoughts on this, Peggy-- great to get an insider's perspective! I had ruled Mathnasium out based on a phone conversation I'd had with someone at a location near us, but I'll give it another look now. He did say we could come observe, so maybe that'd be the best way for me to assess it. Some people are better in action than they are talking about it. Thank you! TH

We homeschool and I sent a message to our group requesting members inform us of potential for illness exposure-- esp strep. We've known many of the families in our homeschool group since ds was in the sling and our group is smaller and more familiar to us than a general school community would be to you, but I'll paste a copy of the email message I sent to the group below in case some of the generalized language/description is helpful to you... TH Message: Hi all, I'm writing to request a favor from all group name members. In the past year, we learned that both of our kids have an autoimmune condition and we just learned this week that ds's name also has an underlying immune deficiency. Because of the autoimmune condition, when our kids get sick, or sometimes even exposed to trigger antigens, their immune systems will launch an attack on their own bodies, particularly focused in one region of the brain. An immune response to any infection-- viral or bacterial-- can kickoff this response, but strep, flu, and URIs are among the most severe. We would appreciate it if the members of group name would send a quick email with a heads up in advance of group events if anyone in their household is or has recently been ill, especially if anyone has an active or recent strep or flu illness or exposure, even if the sick family member will not be attending the event or is already taking antibiotics. This will help us make informed decisions about our attendance and participation and allow us to minimize their exposure at group events we attend--at least to the extent possible without confining them to our house all year (we like our sanity!). And if you see us at an event and realize there's a possibility of exposure we may not be aware of, please just whisper in my ear so I can take appropriate measures to protect the kids. If you're not comfortable sharing personal medical info about your family members I completely understand--but maybe you could just tell me it's not a good day for our kids to wrestle or hold hands? That'd be all I need to know. Thanks a million everyone!

One thing I would be sure to point out or have your docs point out is that IVIG wears off over time AND that new PANS flares can be triggered by new illnesses and exposures-- both strong reasons their "IVIG is a one shot deal" policy makes no medical sense... But since your first appeal has been denied I think it'd be advisable to carefully research your remaining appeal options and any potential missteps on their part that might strengthen your case before you do anything else. Doesn't hurt to have an ace in your back pocket that they know you're sitting on-- then you can hope they're willing to deal to keep you from playing it regardless of the policy loopholes against coverage, etc. Also-- look very carefully at all of your plan documents--is it stated outright anywhere that they will only cover IVIG once for PANS? If not, they're making the rules on the fly and I can suggest some next steps depending on the type of plan you have (self-funded or fully insured). TH

Hi all, Wondering if anyone has used any of the learning/tutoring centers for math remediation for PANS kids whose math has been affected by exacerbation? Dd has had so many exacerbations and had such a long bad stretch prior to finally being dx'd with PANS that her math skills/abilities have been really inconsistent. She's doing great as far as PANS goes now-- IVIG last spring and going strong on treatment dose of abx since. She's doing well academically in other areas but we're both still struggling to get her math back on track. It's so hard to tell what she's got down and what she has lost or never picked up while flaring. Because of this, we've been stuck in a pattern of thinking we're finally set to cruise, then hitting another brick wall. I'm just flummoxed at this point. I'd really like to turn the diagnostics, remediation planning, and at least some of the implementation over to someone else. I also suspect she might regain some interest and enthusiasm working with someone new (who's not her parent). And frankly, I've been operating in the state of overwhelmed for so long now it'd be a huge relief for me to be able to outsource this one stressful thing and know it was being handled. So-- wondering if anyone has used any of the tutoring/learning centers like Kumon, Huntington, Sylvan, etc. If so, would love to hear about your experience, pros/cons, feedback, etc. TIA!

Dawn, Thanks so much for the update. It made my day to learn you got the approval! I'm so sorry, though, for all you've been going through. I hope his treatment will improve things and relief will come your way quickly! My thoughts are with you and your son. -thenmama

Yep- he totally rocked it! Informed, tough, but diplomatic. He's clearly on the ball and fighting for his kid! Love that he pointed out that the Dent docs are misinformed about PANS, didn't perform sufficient testing to rule it out, and they don't have the expertise necessary to evaluate and diagnose these kids. Also- he pointed out that the symptoms don't match well with CD-- and mentioned that had previously been highlighted on Dr Drew's show. I'm not convinced it'll necessarily be PANS-- there are so many factors and possibilities to investigate in this case-- but I'm convinced it's not conversion disorder (then again, I don't believe in Conversion Disorder). But, even Dr Drew admitted (to Dr Bowtie) that his "countertransference" radar was failing to pick up the Conversion Disorder vibe from many of the LeRoy kids. Hopefully he can repair whatever false signaled his CT radar for the other few girls:) TH

Grrr... This thing just reeks in all directions. These poor kids and their families I hope Brokovich and Bowcock wear some sporty new shoes with deep-grooved treads when they walk the grounds. TH edited for typo

Just saw this article about it. The school blocked them and wouldn't allow testing. Sketchy. TH