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thenmama

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Everything posted by thenmama

  1. Forgot to mention that I plan to do the most obvious thing: delay his 1st abx dose tomorrow morning and watch to see if anything changes.
  2. Ds seems to have high and low spots most days-- or what seems like cruising mode with some pronounced rough spots/lows. This is both pre and post- IVIG (we're 2 weeks out). For a while I suspected his breakfast foods were contributing in some way because he (generally) starts the morning in a good place, then around the same time late morning every day, he hits a difficult patch. We're in one right now-- fussing, unhappy, OCD, unable to tolerate anything he doesn't like/expect, absolutely everything and everyone irritating him and setting him off. One of his coping mechanisms when his OCD is very bad is to launch into a spectrum-like perseveration mode-- using some interest/activity that he knows he can fully immerse himself in to "block" his OCD thoughts. He tends to do this when the morning rough spot hits, and he usually has another rough spot and/or launches into that same mode for a while in the late afternoon/before dinner timeframe. I don't know why I never wondered about this before, but this morning it hit me-- he takes his am abx (Clinda) with breakfast and his second dose with afternoon snack, which makes a pretty consistent period of time between when he takes it and when both rough spots begin. He takes the third dose at bedtime, so he's asleep before that amount of time has passed. He doesn't do this after other snacks, lunch, or dinner, so I don't suspect it's a general pattern related to eating and I've never been able to isolate food-related triggers. Grasping here, but has anyone else ever noticed a relationship between their child's abx dosing and either a PANDAS symptom uptick, or other mood/behavioral issues? Other thoughts or suggestions? Or could I be overthinking this entirely and maybe it's just normal to have this sort of fluctuation? And if you want to remind me of what I already know-- that 2 weeks out from IVIG is too early to expect much-- feel free:)
  3. These Egyptian TV commercials for Panda cheese gave us a good chuckle b/c of their unintended, but pretty great, characterization of life with PANDAS-- how it appears out of nowhere, imposes its will, and bullies/enforces. Imagine OCD in the form of a Panda that wants someone to eat or buy its cheese... Plus it so nicely encapsulates the PANDAS name/ dx-- highlighting the discord between the culturally accepted image of the cute/cuddly animal that is panda and the real beast hidden beneath that cutesy image. Anyway, dd, dh, and I loved these, hope sharing will give someone else a smile, too. It's important to laugh sometimes
  4. My ds had IVIG almost 2 weeks ago. We began to see signs of improvement earlier than I'd anticipated-- this past week he's shown signs of readiness to start addressing his OCD. He wanted to learn more about it, get better at identifying it, and he did some ERP in some of the smaller scale stuff and was very proud of his accomplishments (one of his biggest fears has been talking about it or even acknowledging his OCD at all, so this has been pretty huge progress, actually). We've also noticed more expressive language and expression of emotion, as well as broadening of his range of interests, more imaginative play, and more overall happiness. We had a few days of seeing that, then the past two days he seems to have backslid some again. What worries me most is that dh seems to have a cold. He went out and got a rapid strep yesterday to be safe, and he wasn't going to come home if it was positive. It was neg, so he came back home, but he's stayed away from the kids-- holed up in his home office. Ds seems to be experiencing either allergies or a hint of a cold, though-- itchy eyes, maybe a bit stuffy. The eyes seem to worsen when he's been outdoors, so I thought allergies at first, but I don't know now. He would have been exposed to dh before dh realized he was coming down with this-- they played and read together Wednesday night. My dd's allergies seemed to worsen for a short while after her IVIG, then they got a lot better (and wound up even better than before IVIG). Since she had heightened allergic response at this stage, I'm not sure if that's what we're seeing. But, I also think ds has had the eye irritation/eye boogers during flares before. Ugh. Dd's post-IVIG improvements also didn't seem to kick in til a bit farther out from treatment-- it was more in the 3-5 week range that we started to see the really noticeable gains. Both kids also spiked some in their PANDAS right after the treatment, so I can't say if ds has just been starting to experience some gains in fits and starts after the flaring stage, but hasn't hit the full upswing yet, or if he's experiencing a bit of OCD pushback b/c he's been terrified of even acknowledging it, let alone fighting it (so maybe in feeling better he started out too aggressively and it was too much too soon) or, the prospect that concerns me the most-- if he was gaining steadily and has backslid, maybe b/c of a cold. This is so frustrating b/c we've kept him home and have been so careful about exposure. Your thoughts on what we're seeing? Can this still fall within the range of "normal" or okay? Has anyone's child gotten a virus or cold shortly after IVIG and still benefited from the treatment? Since that's my biggest fear right now it'd be great to know if there's still some hope in the worst case scenario. It has taken us so long to get him this treatment and it really was working already-- I'd refused to even acknowledge what we were seeing til there was just too much improvement to deny it. Now I'm so worried.
  5. It may be tricky with the PANDAS in the mix or may not work at all b/c of PANDAS, but have you ever considered taking your dd to Mayo? I don't have any firsthand experience, but I have a friend whose two children had myriad problems with their health (serious), and they were getting shuffled around, conflicting diagnoses and opinions, and not getting any real answers from the local doctors, specialists, or our U health hospital. She took both kids to Mayo and has had an excellent experience in all regards. The health issues were thoroughly evaluated and properly diagnosed and the medical team and care provided are extraordinarily well-coordinated. She's been thrilled with it and most important, her kids are getting good help and making significant progress with their issues. It is pretty well known that they don't treat PANDAS there, but her son's team lead isn't anti-PANDAS, either, he just doesn't treat it and they don't have a team doc who does (she inquired about it with him even though it's not something her kids are dealing with). I'm guessing the PANS position of the other docs there mirrors what is seen in most of the medical field-- it probably runs the gamut between vehement naysayers and those who are open to it or accept it but don't evaluate or treat it themselves. The issue is likely to be which docs end up on your team, and I'm not sure if that's something you could work out in advance. Our peds puts advance calls in to specialists she's considering sending us to so we can be sure we're not going to hit a wall before we spend time and money on an appointment. it's worked well for us because we've worked all that out in advance, and it's all handled peer to peer, not doc to patient. Anyway, just an idea-- and suggested without knowing a lot about your circumstances or the general scene at Mayo beyond my friend's experience. What you're going through with docs just reminded me of her situation.
  6. My dd, then 11, had to get through the IVIG despite intense needle fears, as well as general blood/contamination fears. At the time of her IVIG she'd been debilitated for seven months from an exacerbation. She had been misdiagnosed for years and had previously suffered many severe exacerbations. Within 3-4 weeks of IVIG the improvement began and a couple of months out her life had turned completely around. At thirteen, she's had a few blips here and there, but all have been successfully addressed. She is happy and thriving, and if you didn't know her you'd never know what she'd been through, or that she suffered terribly with OCD for months, and was unable to dress regularly or participate in usual life activities. She has an immune deficiency and may need another IVIG for that at some point, but so far, so good. My ds (8) just had his first IVIG. He, too, had been misdx'd and had unchecked PANDAS for years-- docs think since toddlerhood. I didn't expect to see anything for at least several weeks (based on dd's experience and what others have reported), but we've already seen considerable improvement. At first I didn't want to acknowledge the signs that he was improving, or read too much into them, but at this point it's too much to chalk up, and the changes so obvious, that I feel safe claiming it. He came to me ready and wanting to work on his OCD (with ERP), he's much happier, experiencing far fewer OCD problems in the day, and his expressive language seems to be improving, as well as his level of engagement, the range of interests and activities he's able to pursue (his PANDAS has really limited him), and he just seems more like himself, more like the little kid he is and should be able to be. He only completed his IVIG 11 days ago-- so we are encouraged and hopeful. HTH
  7. landamom, I don't know what insurance carrier you have, but I'm pretty sure your child would qualify for coverage for IVIG on the BCBS guideline used in our region. They cover with a total IgG below 500 for CVID dx. For Subclass deficiency the criteria is > 2 standard deviations below the lower limits of normal, plus failed vax challenge, plus recurrent infections. It's frustrating that companies are allowed to make guidelines with such arbitrary cutoffs, since docs say it's the function that means most, not whether you fall two points below some number or two points above.
  8. Thanks for the suggestions on both fronts. My intention was to spend this week at home, anyway, because he is still recovering from the treatment itself on top of all the other stuff that may or may not be an issue. But I wasn't sure if there's a recommended timeframe beyond that for isolation/public-social avoidance following treatment. I think it'd help him if I can give him a sense of when he can return to class, since he gets upset every time he has to miss. But, I also forgot that we're off for Thanksgiving next week, which already buys us more time/protection. I'm glad you shared about the delayed side effects, too. My dd had severe migraine and vomiting after hers (and unfortunately we didn't have the med plan in place--from what I've heard, her PANDAS doc now seems to order the side effect meds with the treatment but either didn't then or it was overlooked for dd). Once she was through it, though, it didn't return. It's helpful to know this isn't always the case so I can be on the lookout and keep up with the preventives... Much appreciated!!
  9. Ds finally had his IVIG treatment on Friday and Saturday. He is feeling pretty good now. He had some side effects Saturday night, but they passed quickly with our post-treatment meds plan (thanks to all who helped me with that!). Now we're just in watch and wait mode. But... I can't remember how we handled the post-IVIG period with our dd, and even if I did, our circumstances were very different then-- it was summer break and her activities out of the home were already minimal to none. Wondering if anyone can share what their docs say about this, or any other advice or experiences? For context: Ds is homeschooled. I don't need or plan to bring him out for things like errands, shopping, etc. The only activity I am wondering about is his homeschool coop, which meets once a week. It's a small group of families, all friends who'll give me a heads up about any recent illnesses or sick family members. But that doesn't guarantee they haven't been exposed to something while going about their lives. He's had to miss a few sessions already this fall because of a viral illness and PANDAS, and he was very upset about that and desperately wants to attend. Obviously if the treatment causes an uptick in symptoms or he's not feeling well or doesn't seem like he can handle it we wouldn't go anyway. But in the absence of those issues-- any info or advice on how long to keep him out of commission? So tricky to balance their (sometimes conflicting) needs! Thanks all:)
  10. Can anyone point me to, or share any info or resources regarding the pre-medication for IVIG (Benadryl, Tylenol, etc.). Is it part of the admin protocol for IVIG, for the specific products used for PANDAS IVIG, or are there any articles or drug guides you've seen and can point me to about this? We're preparing for ds's IVIG, which was delayed (again!) b/c we had a virus in the house. It's being ordered differently than dd's and the only concern I had was a mention made of not needing to pre-dose with anything. If they meant that we don't need to b/c they'll do it when he's admitted I'm okay, but if it meant they don't plan to pre-dose at all, it makes me nervous (though I don't know if I even should be-- just never seen mention of it being done without Benadryl, at least). Looking for any info/resources before I have a discussion about this later, so I'm better prepared myself and have good info on hand if I need it. TIA!
  11. Stumbled across this in my research and thought I'd share. Lots of interesting connections and info. Also maybe worthwhile for its citations-- long list of articles and a number of titles that look like they could be interesting/relevant-- especially for those dealing with MycoP. Bacterial Infections and the Pathogenesis of Autoimmune Conditions edited for typo
  12. Yes, it is nice to see someone covering the "controversy" and being so forthright about some of the reasons behind it (and calling out the study with inappropriate subjects, etc.). I am thrilled that this article was written and PANDAS is getting such great exposure. But, in the bigger picture (beyond this article)--- here's one thing that boggles my mind whenever the PANDAS/PANS controversy, why isn't anyone pointing out that PANDAS was elicited in mice in the Columbia study--mice that didn't have OCD behaviors before they were injected with GABHS antibodies? If some resist or have trouble making sense of the PANDAS infectious trigger b/c kids are so regularly exposed to strep (and yet not all will get Rheumatic Fever, even if untreated), maybe thinking about the mice, who've all skipped the elementary school germ-fest, would paint a clear enough picture. And, why isn't anyone also pointing out that if sticking to the same standards of "evidence" the naysayers are applying to PANDAS/PANS, we'd also have to eliminate all of its differential diagnoses? There's no definitive (not theoretical or hypothesized) "proof" for OCD, Tourette's, ADHD, Anorexia, etc. (or Autism/Aperger's/PDD-NOS). There are widely accepted theories, or assumptions, that serve as the basis for the establishment, diagnosis and treatment of these disorders, and there may be some good research findings to support these theories and hypotheses, as well as a lot of clinical/anecdotal findings, but there aren't absolutes. There's not hard scientific evidence yet that can fully confirm these theories and assumptions. And by this, I mean an equivalent type or level of evidence that the doubters and naysayers use to discredit, reject, or undermine the existence of (and treatments for) PANDAS/PANS; the incontrovertible scientific evidence that conclusively proves the existence of the condition, confirms its proposed etiology, and establishes objective diagnostic tests and clinical measures, etc. And yet those who doubt or are resistant to PANDAS/PANS, and those with an active anti-PANDAS agenda, use this hypocritical burden of proof to reject the condition and its treatment options, and lump the children who have it into these other diagnoses/conditions, all of which would also fail the same burden of proof-- if it were being applied. But returning to the positive-- so happy for this coverage and thought the inclusion of the Leckman conversion (and issues surrounding that paper) was smart and well handled. Very appreciative to the author, and his family that allowed him to share their PANDAS story. Kudos!
  13. I think, or thought... a carrier may or may not have elevated titers, as EAMom points out, but would swab positive-- always, right? Because they carry the strep bacteria but are not acutely ill? That would be why the negative swabs in between positives are significant. So, Mar, to answer your question about the swabs, I'm pretty sure, and hope someone will correct me if I'm wrong, if someone swabs consistently positive in that absence of an immune response/active strep infection, they would be considered a carrier, but if the person tests negative by swab in between positives, that person would not be considered a carrier (to the extent that swabs are accurate).
  14. I understand how concerned you must be. We've had trouble with strep recurrences (despite dd being on a treatment dose of Augmentin) and in trying to figure out the source everyone becomes a suspect. Because of what strep means for us and our families it is a really big deal. And we naturally feel like everyone should get every sore throat swabbed and know exactly what bacteria they're harboring-- because that's our understood way of being now and because their sore throat has some potentially significant implications for our children. It is also important to remember, though, that other people's lives and kids aren't ours so they don't live in PANDAS mode. And to be objective, if the boy is a carrier they are under no obligation to treat him for the sake of your children. Of course that doesn't mean if the kids are really good friends and you would have to keep them apart that the parents may not decide to treat him. But, to be fair, it means their child would need to take some heavier-hitting antibiotics that aren't considered medically necessary for him. It's not standard medical practice to treat every strep carrier, so you'd be asking someone else to give their child medication for your kids' sake, not his own, while also exposing that child to any risks, like C diff, associated with the antibiotic treatment. We've experienced that exact scenario firsthand-- my dh was hospitalized within the past month for serious c diff with colitis that he got from the abx combo given to clear strep b/c our kids keep getting re-infected and they've all been passing it around. But, I don't think this boy would be considered a carrier if he was recently dx'd with a strep infection. I could be wrong and someone here with a strep carrier in the family will probably know better, but I thought strep carriers didn't get sick from it? The fact that he's had a recent infection, has a low immune system, and has the history of illness/infection (plus the stomach ache with it-- that can often be associated with strep infection) makes me think he's also vulnerable to strep. And naturally when you mention that he has "some autism" I start to wonder about the strep, illness pattern, etc.-- try as I might to not view everything through my PANDAS lens. So, maybe the first thing you could approach with the mom, depending on your relationship with her, is sharing info to help her make an informed choice about whether or not to have her son re-tested for strep. If someone confirms that carriers don't get acute infections, that info would be a good place to start. It isn't easy to live and let live, but (in the absence of true negligence or endangerment that require reporting) it's important to try. We only parent our own children and we can only control the things that are ours to control. That just ain't easy to begin with and PANDAS parenting just ups the challenge level... Anyway, maybe my rambling reply will hit on at least one or two of the answers or suggestions you were looking for:) Hope things work out well for all involved.
  15. Our vets are really cool about it, too-- they actually advised that it was easier/better to just treat the dog to be safe, I think it was b/c they said culturing a dog was more difficult and expensive than it is for running the human labs. When our common-sense-deficient schnauzer stuck his beard where it didn't belong recently and something stung the end of his snout, and then that started to look infected-- the vet put him on abx that would also cover strep, as a bit of extra reassurance for the family's humans. So it is definitely worth asking your vet about either testing or treating for it.
  16. It's almost open enrollment and given our medical expenses we've decided to re-evaluate our plan options this year, instead of automatically re-enrolling in the HMO. Wondering if the plans that are more costly up front might actually be better for us in the long run. Has anyone else done this? If so, any tips on plan shopping and/or feedback on other plan types? I know a lot of it will be plan-specific but still interested to know how such changes have worked out for others. Also would really (really, really) appreciate any heads up you may have on things to watch out for when comparing plans, pitfalls to avoid, etc. Thanks all!
  17. Shoot- was just typing a response and my browser hiccuped it away... anyway, just wanted to let you know that my ds, and at least one other child on this forum, get petechial rashes that coincide with exacerbation. I'm trying to remember now if the other parent whose child has this had gotten any explanations for it from her doc-- maybe she'll chime in. Unfortunately we haven't figured our ds's out yet. There is at least one old thread about it, possibly a few, if you search for the term "petechiae" or "petechial" reash-- that's the term for purpura that is under a certain size, like the tiny little spots of blood you describe (almost like little freckles). You could try googling petechiae and purpura to see if it fits. Anyway, pretty sure the person whose child gets the petechiae gets the outbreaks on the body-- my son usually erupts on the face neck, down into the chest. Docs look for a cutoff at the nipple line as a sign for more worrisome petechiae (those going below that point). My son's usually only eek over that point, but he also does not present as a typical case of the benign "fragile capillaries" that gets these outbreaks with pressure (e.g. coughing, vomiting, crying) because more often than not he doesn't get the outbreak with those things, and when he does get the outbreaks there isn't any change in those type of things. Plus they always coincide with PANDAS exacerbations. Wanted to mention, too, that my ds is also prone to bumpy rash outbreaks during a flare. Multiple docs have been puzzled by these (and always in absence of positive strep, though there may have been a temporal relationship to his perianal strep, have to double check ). Our PANDAS doc saw him on the resolving side of one of these rashes, though, and thought it was scarlet fever, or strep-related b/c there was still enough of it for her to look at/feel. It is rough and sandpapery, usually on his torso. He gets other rashes, as well-- our mystery skin symptom boy. I think I'd found a paper once about petechial rashes (on body, not palate) associated with strep. Will have to look for it. Anyway, not an answer for you, but wanted you to know others here are experiencing some similar issues and are seeking explanations, as well. At least we can all share info and experiences and hopefully one of us will get some helpful info soon!
  18. Congratulations!!! So happy for you and your family!
  19. Well said, Airial. I agree with you on this one. For various reasons, I haven't liked, or agreed with, much of the way Beth has been handling this case on the public side (I'll go hide from the incoming stones now:) ) , and I'm afraid some of the fire, and fueling of that fire, could work against PANDAS (which in this situation would also be in favor of BCH). Enlisting and unleashing those who've had the hardest roads to finding help, those who've been through the long lists of docs, to share their experiences on BCH's wall is one example. It's playing right into their hands, and making the PANDAS community too easy to dismiss (for those inclined to do so). Good activism is seeing through these things in advance and strategically approaching the issues in the ways most likely to make a hit, or deliver a message, etc. I would like to add more to your comments on this front, but have to run for now to tend to my 2 sick kiddos and 1 sick dh (I am the only one left standing-- and my coffee machine broke!!!!).
  20. My ds gets them sometimes-- also during flare periods. Put two and two together after the fact, so we haven't gotten to the bottom of it yet. Our ped wrote a rx for an antiviral and said to fill and start it next time he gets them. Hoping to see if it helps, and b/c that may also give us more info. Sorry don't have more info-- my kids are still little clusters of mysteries, and far fewer answers...
  21. I ditto what everyone has said so far. The flu shot precipitated a major exacerbation for our dd, and we were told by our PANDAS doc no vax-- especially no flu vax. Also wanted to add 2 cents from another medical perspective... prior to my dc's PANDAS dx, when my dd was suffering many respiratory illnesses with bronchitis and asthma/airway complications, our old peds had us avoid FluMist b/c of its shedding-- to the point that nobody in the family could get it, we didn't play with any friends who'd had it for a couple of weeks til the risk would be gone, and we tried to avoid anyone/anywhere there was exposure risk. This was our regular general ped at the time, not an ID, immuno or pulmonary specialist-- so the risk of transmission to those at-risk via exposure to others who've had Flumist must've been pretty well known. This was back when they were giving my dd the shot b/c she was at risk from flu and we always had a period of several weeks of exposure avoidance while we waited for her shot to become protective (we didn't know the protection itself was a risk for her back then). I can't remember exactly what we were told last year-- but I remember thinking our PANDAS doc's advice was pretty consistent with what we'd done in the past-- minus the shot for dd, of course. HTH!
  22. Thanks, Kath, very helpful info. Much appreciated
  23. After a series of ups and downs and a loooooooooooong (almost 10 month) wait, ds is finally going to have IVIG--got a message last night that as soon as we say green light the doc will order it! We've been through IVIG with dd, so I am familiar with the basics... but this one is being ordered by our peds instead of the PANDAS doc and it's been a while since dd had hers so I just want to check in with others to find out about how they prepare, what the PANDAS docs' latest protocol are for things like pre- and post- procedure medications, etc. We've already begun operation hydration at home and I've stocked up on fluids to bring with us on treatment days. When dd had hers, they dosed with Benadryl (and I am pretty sure Tylenol) on the mornings of treatment. When she experienced side effects (headache/vomiting) after day 2 when treatment was done, they gave her Ibuprofen and Prednisone (which she'd been taking going into treatment). Here are some specific questions I have for anyone who has a moment to reply to any of these. -Has anyone's doc stopped abx such as Clindamycin in advance of treatment? Do they just skip on day of treatment? (I can't remember what we did with dd's abx going into treatment, and hers is Augmentin, his is Clinda so I don't know if that would make a difference). I didn't see Clinda listed as an interaction, but will research that further to be certain, too. -Does anyone have experience with how abx are handled after-- especially in a case like ds's where the child hasn't been able to take a "lighter" hitting abx such as Augmentin b/c of infection recurrence? We knew dd would be doing Augmentin and this wasn't an issue going into hers. -What are your doc's pre- and post- procedure medications? Benadryl? Does your doc use Tylenol, Ibuprofen, anything else? -How about Prednisone? Ds is not on it now, dd was already on it for symptom relief going into treatment (I don't think she took it on infusion days, so it was before, and then after when her side effects kicked in) I have pred on hand because or doc rx'd it for him yesterday-- b/c we didn't know how long the admin part would take and he's miserable. I haven't spoken to her since we got word, and I just picked it up last night so he hasn't taken it yet and we can go either way. -These two are big ones for me: 1) Did I read something about Gamunex and it needing something else dripped with it, or not dripped with it-- or was this info old, or not relevant, or maybe I invented having seen something like this? Anyway, if there is something like that, even if it should be obvious to the infusion providers, I'd like to know. I know this product isn't used as much around here and this whole treatment is new to them for this-- and in general I think it's always good to know as much as possible and be able to keep an eye/ask questions 2) About the rate of the drip: Dd had major side effects following the second day of treatment. I know this is often the case/timing for side effects. But, I also know that we had a different nurse the second day and there were times that we had concerns about symptoms/side effects/things dd was experiencing during the infusion and had to ask for help. This nurse also sped it up more than the other had and was not attentive enough-- which made me wonder if the speeding up was more for the procedure or more so it would be over (this among other concerns- we're not doing it there again). Is there any standard for the rate at which the infusion is given? Does it matter? Is there any advantage, other than how long it takes to complete, to increasing or reaching a certain rate? I'm not in a hurry and my gut (wrong or right) thinks the second day hurry may have caused or contributed to the really awful side effects dd had the second day. Other than those specific things I'd love to hear about the different PANDAS docs' protocol and anything else you'd like to share or tips you may have would be welcome and appreciated. Our ped may already have some of this worked out (I haven't had a chance to talk to her since I got the message), but I'm hoping to get some PANDAS-specific feedback before we talk later on so I'll have a sense what the PANDAS docs are doing now and if there are any PANDAS-specific differences or any questions arise she can investigate or consult as needed before we put this thing in motion. Thanks all!
  24. I saw last night that Beth and the Wrays can no longer comment on the case because the judge has issued a gag order.
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