SarahJane
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Posts posted by SarahJane
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Streptococcus Mutans is the bacteria that lives in our mouths & causes tooth decay. http://en.wikipedia.org/wiki/Streptococcus_mutans
I'm of the thought now that any form of strep is bad strep but realize that it's everywhere. The mouth in general can harbor so much bacteria. After IVIG, we are to get full dose abx 48 hr prior & 72 hours post to ANY dental work done over the next year. Plus, there's enough anecdotal evidence about issues when our kids lose teeth or cut teeth, that the braces effect isn't surprising. They put braces on teeth a lot earlier now than they used to...back in the day. (Heck...that's what I got for my 16th birthday present...some kids got cars...I got braces AND was ecstatic about it...seriously. If only I'd worn my bottom retainer longer!)
I remember in Saving Sammy that his braces were taken off at some point with a cause given as low oral hygiene...maybe there was more at play. I know that my ds had his first loose tooth which coincided with illness during this strep exacerbation...actually he lost 2 teeth during this time. With that first tooth, we saw much anxiety that seemed to be a bit above what we thought would be normal but it was his first one. He kept that 2nd tooth in there just barely for over a week past when it shoulda come out. But both times, he pulled the tooth out himself while he was alone...didn't want our help (naturally). He also had another 6-year molar pop thru during this time. And now that I think about it, his 1st 6-yr molar was coming thru during his spring exacerbation. And yes, he'll likely need braces. Whew.
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The Lyme parallels I saw (& I just bought Osler's Web so I'm sure they'll be the same with Chronic Fatigue Syndrome...plan to reread "And the Band Played On") were more in the politics of it all vs. symptoms. That it doesn't exist in chronic form. That doctors treat patients like they're crazy. That it's hard to get treatment or treatment given isn't enough but is deemed enough by the pros. I didn't get thru the entire book yet (too much going on), but I was able to sit thru "Under Our Skin," which was very enlightening. I don't wanna make this all about Lyme (I'm still basking in the white paper news!), but I highly recommend that movie. I'm not sure that it's intentional the way these diseases get brushed off as much as there are so many minds trying to do so much work without total understanding it all or access to all the other info. I'm not an optimist, so I do have theories...one being the mass hysteria would be rampant if everyone knew what we PANDAS parents know & what Lyme patients know & what CFS patients know & autism parents, etc.... Plus, how do you boil it down to a neat 2-3 minute news story that will keep someone's attention while the crawl below it has breaking news about a celebrity scandal? How do you tell people that down is up & up is down? Takes a lot of getting used to the new gravity even when you're experiencing it...let alone those unaffected & living a good life.
To the abx/IVIG stuff, I'd say that if protocol is that IVIG is an official step & recognized PANDAS treatment, then insurance companies will have to start covering it. That seems to be a BIG impediment to that option right now...and finding someone to do it. If you look at exacerbations with varying levels, then yes, IVIG may be too much for 3 days of frequent urination...especially if strep's detected & treated/eradicated. To me the long-term abx is to keep infections at bay so that the kids don't get sick & have another exacerbation vs. remission. (And you are on abx for a year after IVIG to ward off infections.)
It's definitely hard to speculate. My take on the white paper is that it will make some happy, some mad, and some will have mixed feelings about it...just like anything else in life. BUT we should all take heart in that so much great press & research has happened. (Vickie--kudos again on that slideshow!) This will sound weird, but I'm glad we have PANDAS now vs. a few years ago (even tho' we likely did have it a few years ago & didn't know it--grrr. AND I wish we didn't have it at all...duh!). ANYWAY...being able to talk to others that are going thru the same things...visit web sites devoted to PANDAS...sharing info thru social media...all this wasn't here say 4 years ago, right? (Maybe the forum was.) I think I've made my point. The white paper, no matter what it says, will only be another check in the column of VERY GOOD things that have happened in the history of PANDAS. And while we're on the forefront of all this, think about when our kids have kids, and the pediatricians don't give a 2nd thought to strep causing any strange behavior & just treat it. Heck, with the way our kids are in dr's offices, it's likely many of them will be doctor's in the future.
And maybe that's not an accident. (Not gonna go all spiritual, but it's weird the connections that happen. And I'm gonna leave it at that.) -
Another interesting thing he said is that PANDAS patients should be evaluated on functioning in three ways: family, school, and social life. If one of those gets very debilitated, then it is time to advance the treatment to the next level. In our case, we will try abx again first, and if this is not sufficient, we will go for IVIG.
this statement kinda concerns me....as we are the cusp of all this learning...
and who is to deem what is acceptable for the childs future life other than 100% recovery....
that someone may say you are 90% and that is good enough.....i have a hard time with anyone making that decision for another human being...
i am not saying that that was what exactly intended by the statement...but as i've said before...who can say that person who has tics can drive a car they are functioning...but they have continuous facial tics...that is ok...what kind of job can they expect..as humans are judgemental by nature...who is to say what a person can live with that and not feel bad about themselvs, when they know that maybe if they had the opportunity to try ivig or pex that they might have FULL recovery.....
yet..lets go to a topic that was a little touchy... a woman has a mastecomy and gets recontructive surgery that is seen by no one but her and who she chooses....
sorry ....just being a little defensive!!!!!
Oh...I really don't think that's what he meant. PANDAS is very likely to hit all of those areas & hit them hard...just maybe not at the same time or gradually enough that you make unknown accomodations until suddenly those don't work either. When he talked to us about it, he said a person can be debilitated but still be able to walk. That's when he talked about the 3 areas & how they are affected. Dr. K really does get what PANDAS does to a kid, to a family, to everything. I'd speculate that he only means that you would use the medical interventions in steps/stages...pretty much like what happens now (abx, steroids, IVIG). I'm confident that full recovery would always be the mission.
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Wow! Great info! He talked about the family, school, and social life issues in our phone call. (Family..said we wouldn't be calling him if this wasn't affecting our family; school...we are already homeschooling & weren't able to do that during this exacerbation; social...he said he didn't think we were doing Little League on the weekends---nope.) Dr. K is just great!
That would be nervewracking just waiting. BUT you know what to look for & what signs to watch for in your son, so you're one step ahead from where you were when this initially hit. You can do this! I'm glad you had a good appt.
SJ
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So very sorry this happened. I'm not surprised, but I'm very sorry. You're not crazy at all. Sometimes I think we are the most sane people in the world because we know how it all works. It's frustrating to have done the research & see the obvious pattern in the medical history & then be shot down by the same people that should be pointing out the pattern to US instead of vice versa. Geez! And ANOTHER THING...shouldn't these psychologists/psychiatrists be more knowledgeable about the brain & the effects that disease might have on it? IF RF & SC are caused by strep & are treated with long-term abx...I truly, truly don't get the hang-up with PANDAS. It's documented. NIH said microbes can cause mental illness. I can't wait to dance at some PANDAS parade or whatever it's called by the time it's more mainstream. Heck, I might even have my own little parade when it's finally freakin' accepted. Where is the white paper? And will we have access to it so we can send it to a few people?
Isn't there a PANDAS doc somewhere around Charlotte? Concord maybe? I'm not saying don't go to the expert...that really is your best shot. But maybe for post-dx care, there might be a closer option. I'll see if I can find my list & PM you OR maybe some1 from NC will send you info.
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I'm so happy for you...for him...for your entire family! This is very encouraging. Healing is good...that's how he will get HEALthy. Happy Holidays! And here's to a HEALTHY 2011!
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That was TOTALLY AWESOME!
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One of the best explanations that we use & people at least nod when they hear it whether they understand it or not is to compare PANDAS to RF. How RF, which is also strep, attacks the heart, but with PANDAS that the strep attacks the brain & can cause a whole list of mental illness, social/emotional, & movement symptoms due to the area affected. There's no cure but there are treatments...one being abx just like RF. Then go on to complain about how nobody understands the toll this takes on your family and the political nature of the disorder and how there's not enough funding for research (and give them all the options of where they can donate) and basically go on & on & on...IN YOUR HEAD...because once you've talked for 2-3 minutes their eyes will have glazed over & they'll be ready to move on to another topic.
But seriously, the comparison to RF does usually make sense to people. I usually say something about what a nasty bug strep is. One time I was telling a clerk in a fabric store about PANDAS, and she knew someone who got a strep skin infection that she didn't get treated & ended up having her hands & feet amputated, was in her 40's with 2 small children. YOWZA! (RELAX PANDAS Parents! We are treating our kids! Don't start worrying about all that!) You'd be surprised the stories people have about streop. My mom-in-law got a call from one of her friends whose daughter had SC back in the 60s & she was telling her how there was no way she could know what our family was going thru. Know who dx'd her daughter with SC back then?...a psychiatrist!...actually asked when her daughter had had last had strep. Put her on long-term abx. That mom thought we'd come a long way since we had the IVIG scheduled. I was thinking how far we'd fallen behind since now the SSRIs & other drugs trump abx for illness.
Good luck with your holiday gatherings!!!
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As some of you know, we did HD-IVIG for ds(6) almost 2 weeks ago with Dr. K. Some things are better. Some things are still bad. But as I write this, I have to say that nothing is worse, so that's good, right? We still have some symptoms, but some are gone. What we do have are likely less intense than before or at least less frequent. And like Dr. K said we might, we've seen some behaviors that we'd never seen before, but they've been short-lived. His tolerance of the IVIG was good (no headache that Tylenol couldn't manage...tho' I am a little worried since it's been said that the BIG headache is a good sign...only a PANDAS Mom would wish a major headache in retrospect, right?). He didn't have the nausea. He actually showed positive differences from Day 1 of IVIG to Day 2 of treatment. He's tolerating the daily zithromax/250mg well (a few days of belly pain & now no side effects). He has run a few fevers, but medicine broke them. Right now, the insomnia is one of the biggest issues we have. Rages are becoming more tantrum-like (or what we might call "rantrums" because they're in between)...BUT they occur in the wee hours of the morning, so we don't handle them well when we're sleep-deprived & we usually throw our own tantrums. I think I've finally found options he'll take for all the supplements he's supposed to be taking. I was able to start homeschooling again this week after a long hiatus...very positive. I have started to try to plan things even tho' I usually have to cancel them, but I have learned to write things in pencil or at least not get so upset when I cross stuff out on my list. (As a Type A Procrastinating Perfectionist Chronic Listmaker <whew!>, this is a BIG thing for me to learn! I'm definitely one to sweat the small stuff despite the saying. I believe in having Plan A-Z but resent having to deviate from A.) We're not planning to do most of our holiday traditions this year, but maybe in the coming weeks we will find that we feel like doing some things. (Even decorating a tree is up in the air right now.) We still keep his exposure to the masses at a minimum & won't do much traveling to see relatives (or inviting them down either). We're just almost 2 weeks out from the IVIG, so I really am trying to be objective. I have a big spreadsheet that I'm using to track things, which does show me that symptoms are lessening & positive behaviors are mostly growing. We are a long way from Week 12 where IVIG will be deemed a success or failure (which falls smack on his 7th birthday--thanks Universe!)...and I've learned to leave it at that because as soon as I say something more positive that I regret it in just a few hours. (See, I AM learning! Or am becoming extremely superstitious.) I haven't written my 2-week update report for Dr. K yet but will send it over the weekend & see what he says.
The moral of my story: Overall, things still suck, but it feels like maybe they don't suck as much.
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HUGS & BIG PATS on the back to you with a comforting "there, there." It's so hard to keep it together. We all know that. And I only have one kid...I can't imagine dealing with this with multiple children. Seriously...y'all are saints (even when you think you aren't acting like it). You ARE doing important work with your kids and on this forum and in other places. I HATE it that you had such a crappy day.
I know a gripe I have, which is probably shared, is that I AM a good mom, but I rarely get to feel like it anymore. I used to do all kinds of fun things with my ds. Now, I hardly do anything (can't even plan anything anymore), & when I do, he truly doesn't appreciate it. Not that he's supposed to appreciate everything since he's only 6, but getting no glimmer of recognition is brutal. It's mostly the fact that with age regression, we're dealing with a toddler right now in so many ways...and he wasn't really all that toddler-like when it would have been appropriate. And I went out last night with my book club to a restaurant to "celebrate" the holidays. Of course, I hadn't read the book. As I sat there, I realized that I have nothing in common with these people anymore. Nada. A few of them have kids about the same age as my son, & their conversations about them seems so foreign. They were talking about things they're doing with their kids for the holidays...we are very seriously probably not even putting up a tree this year. All our traditions are shot...we probably could do some of them, but we don't feel like it. This is the worst Christmas ever, and I even had a miscarriage ON Christmas Day 4 years ago. But just a few months ago (& definitely last Dec), I could have chimed in with the group & been witty & laughed. Last night, I mostly ate my burger since I hadn't eaten all day, drank my glass of wine, & tried not to be too freaked out that I was out in public. (Does anybody else feel like they have a big neon sign over their head that flashes "my life is a mess"?) I did enjoy the chocolate fondue dessert we all shared tho'.
One of them was talking about how her kid came home sick from school that day...I had an internal FREAK OUT. Another person was coughing...another internal FREAK OUT. Someone said that I was awfully quiet & I just said I had A LOT going on so it was better if I just didn't talk...she asked if I was ok, & I said yes, that it was my son. The table got quiet for like a full minute...I said "see what happens when I open my mouth...that's why I'm not talking." And when I did talk for about it for like 5 minutes before I left, it's so hard to explain the depth & breadth of the situation. I went thru what PANDAS is since this lady didn't know (like RF but strep attacks the brain) & gave some symptoms my son has & stuff. It doesn't even begin to explain it tho'. And I know people feel bad that we're going thru all this, but it really doesn't help make it any better. I'd probably actually quit the book club if I wasn't the person that gets the key from the bank for the community room because I set up an account so we could meet there. It's not because I don't like book club, but it's exhausting to pretend to be normal that long right now. I've missed many meetings this year anyway...just get the key & give it to someone. That's probably what I'll do in Jan. And even tho' our son's recent IVIG is having positive results, there are still some negatives. And let's face it...even if miraculously things were suddenly all better, I'd still need a year or more to recover from this roller coaster ride.WHEW! So I hijacked my supportive post dedicated to you in order to do my own rant. Maybe it helped you realize that every single one of us very likely have at least one major freak out everyday. You are loved by so many people here that don't even completely know you...but if we did know you completely, we'd just love you even more! HUGS!!!
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Congratulations that you got a dr to diagnose PANDAS. Knowing what you're dealing with is half of it. But I read your note to say that he's substantially better, so that must mean that some residual issues still likely exist.
I'm with Phasmid that "it depends on the child." My ds(6) has had major exacerbations with his two cases of dx'd strep (Dec '09 & Sept '10...we just did IVIG last month). BUT once we knew PANDAS existed, we went back thru the medical records & sure enough there were infections, illnesses, &/or shots that coincided with most major behavioral issues we could remember since he was 2.5, & they rarely test toddlers for strep--they'll say kids don't even get it until they're in school or something like that. We thought his episodes were growth spurts but very likely it was PANDAS in at least some (if not all) cases. With more knowledge now, we also realize that some things that were always present in between were probably PANDAS too. Once you know more about the disorder, you may also see some earlier stuff that could've been PANDAS but was explained by "age" or a phase. You didn't mention if your son is on the spectrum, so I'm guessing he's not, but early onset can look like autism just in case that question has ever surfaced.
EARLY treatment is good tho'. So your question was whether you should go ahead & seek specialists...my answer would be yes. Let the experts tell you if you should treat now & how to go about it. I can say that in my ds's case, the 2nd exacerbation this fall was much worse than the first one last winter (we were undx'd until Oct) & I lost treatment time trying to get the dx.
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Here's what I think. They probably don't get their money if your daughter is out of school. They want her there part of the day so they can get it or a portion of it. The teacher may also be envisioning that your daughter will cause her extra work when she comes back after being out for months. Or they may be worried about her achievement scores, & if they'll be low enough to pull down the average. It is all a game. But you have the doctor's note & if that's all that's required, then case closed. One hour of school is simply just an hour of germ exposure. I like thenmama's no frills/direct approach above. Nip it in the bud. Enjoy your holidays with a HEALTHY daughter.
P.S. I homeschool now after a horrible public school experience last year. PANDAS hit at the end of Jan. We were undx'd & the 2nd half of kindergarten was awful.
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When you see your childs teacher in the hall instead of a smile and polite "hello" you get: an eyeroll and an "UUGH" expression.I Know it shouldnt bother me by now but it does
When my son was in kindergarten last year, I wasn't making eye contact with or talking to his teacher by the end of the year, and I had been the Room Mom! (Undx'd PANDAS started the end of Jan & 2nd part of year was markedly different from the 1st half.) This year, his 1st grade teacher smiles at me all the time...I'm homeschooling.
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Could it just have been a stomach virus? That doesn't make it any less scary becuz PANDAS could still flare. But maybe (fingers crossed) it was just a 24-hr bug. Hope she stays well!
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It's GREAT to hear your good news! Good for you & your family! Here's wishing your son continued health & recovery. Thanks for giving hope to others.
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Everyone has given you good info, but I wanted to add a few things.
1. Yes, your docs might say 10 days is enough to know whether it's PANDAS. My ex-doctor actually told me that if my son(6) had PANDAS that 24 hours on an abx would have been enough to clear up any OCD/symptoms. (If any PANDAS Parents read that last statemnt, be sure to hold onto your chair so you don't fall out of your chair laughing!) That is why I said go to one of the experts. Being in VA, you're closest to Drs. L, T, or B. I used Dr. K (did IVIG this month), so I can't give info about any of the others, but many on this forum do use the other docs. Don't waste time with your doctors. Even if they say they believe it is PANDAS, they may not treat it accordingly or get bogged down by all the other dx's you've had. This is how I think of it...my son doesn't have OCD (and all the other alphabet soup)...his brain just makes him act like he does. So that's why treatment for the mental illnesses don't work...they don't really have them. But they DO learn bad habits that may need CBT or ERP to correct...that I do believe.
And depending on where you are in VA, there are some PANDAS families around the state...I think some have even been trying to get a support group started.2. There is a high prevalance of siblings having PANDAS. I only have one child, but there are a few on here that deal with multiple PANDAS kids (Bless their hearts!). Anyway, you said your son was HFA, so if you haven't already, you may want to consider if he has any co-morbidity issues with PANDAS. (How does he handle illnesses?) Misdiagnosis is a big thing too, and if PANDAS has early onset, then it looks a lot like autism. Many kids also get dx'd with ASD later than usual, which connects that dx to the PANDAS. (My son is not autistic, but during an exacerbation or when raging, it can look like he is.)
3. And you have to think of PANDAS symptoms as occuring when the immune system is activated. They don't have to get sick...just have their immune systems triggered. That's why flu shots, vaccines, viruses, and obviously, bacterial infections cause issues...allergies too! They can have negative strep tests but react just to having been exposed to the bacteria. It's a good idea to check your entire family to see if anyone may be a carrier. (You may've figured that out from reading the forum already tho'.) And PANDAS is a clinical dx, so don't let negative tests fool you (or your docs) & look at the entire symptoms globally & in relation to illnesses/exposures. Low titers do not rule out PANDAS...make sure your docs don't try to use that one on ya. (I have trust issues...sorry to project.)
All the Best!
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It certainly sounds like you're in the right place with everything you've described. If you felt relief that you'd found your answer when you read thru the PANDAS info (like you'd never felt b4 with other dx's give by the dr's), then it's probably PANDAS. My advice is to go to a PANDAS expert and not waste time with docs that may/may not believe in PANDAS. Not sure of your location, but the experts will get an answer to you more definitively than any regular doc/therapist will & treat it as it should be treated. Also, SSRIs weren't successful b4 per your message, so I'd fight the CBT on that based on her history with them. (They're actually not recommended for PANDAS despite some of the conflicting info out there.) I don't know where the "year to work" thing came from either...it could take longer or it could be less time--just depends. With the age of your daughter, you don't have time to spare with treatment, so that's another reason to get to an expert. In the meantime, get the doctors to run strep tests (rapid/culture & titers) & check for Mycoplasma Pneumonia...sinus infections can cause symptoms too tho'. AND many of our kids are asymptomatic to strep, so they may not have the sore throat or fever & they may have low titers...that's what makes it so frustrating/scary!
I'm glad you finally found PANDAS and that you're finally able to get some help for your daughter & your family too. You've been on a journey & now it sounds like you're on the right path. GOOD LUCK & WELCOME to the forum...we're happy to help & share info.
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Have a HAPPY Thanksgiving yourself Emerson!!!
Peace.
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Geez. It seems the trip has already cost you (plane tix), but is there anyway you could stay the nights at a hotel & reduce exposure? There may be vacancy issues with the holiday but finding one with a pool could be a little reward.
Or are there other relatives that would let y'all crash at their pad?I thought it was the other way around...they'll do rapid tests like crazy but not grow a culture. Maybe they didn't do the rapid since he's on abx & could have a false negative...not sure that applies to cultures. It irks me that they wouldn't give abx tho'...if you think they might be sick then why not give the abx just in case & then fill it if test is positive?! Grrr. Also, did they check for an ear infection? I believe I read that they're common after strep throat. (My son got one after/during his last strep case & 2 doctors missed it...was urgent treatment that found it & didn't even do another strep test...we got zithromax after he'd been on onmicef/10 days for strep.) She could even try another clinic.
GOOD LUCK & Happy Thanksgiving!
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HIP HIP HOORAY! Glad you shared the good news. Terrific!
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You see Panda bears everywhere while at the toy store doing Christmas shopping & hide them so you don't have to look at them. It also keeps you from ripping them apart! Seriously...is it just me or are those bears just all over the place this year?! AND you're not sure, but wonder if any of your friends might think it's "cute" to get you some sort of Panda bear gift for Christmas...then remember that you never see or talk to them anymore, so the idea of getting gifts is remote. And if your son gets anything Panda-y for Christmas, you know you're gonna immediately dispose of it. Thankfully, his favorite animal is an elephant, & I don't think that acronym would ever work...no matter what they rename it.
Another one is when you tell the story of what PANDAS is to everyone. My GYN was listening and had to put her gloves on to shut me up. Geez. And the little guy at the vitamin shop--his eyes just glazed over when I started telling him. Met a nice lady at Target in the toy dept & gave her my Mommy card since she also homeschools & then I didn't shut up about why my son was on homeschool hiatus & am sure I freaked her out...never heard from her. And yes...I'm the weird person that talks to strangers out at stores because I never get to practice my social skills anymore...and what's worse is that I'm an introvert, so I seem really weird.
@Emerson--I was gonna say the Facebook thing too.
@P. Mom---what an awful story. I was talking to a lady that my hubby works & she told me that her best friend's granddaughters had strep & I could feel panic & the change in my face & this lady hadn't even been around those kids.
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We did a 5-day burst to try to get relief from exacerbation symptoms. We thought we'd hear the birds singing & see the clouds part & feel the cool breeze on our skin. Turns out, we just didn't get rages for a few days & ds slept in his own bed. He sat thru a play at the children's theater. And I started planning more outings because he was doing so well. Now...all this we realized in retrospect while we were waiting on the birds/clouds/breeze. If we hadn't done the 'roids then maybe things would have gotten worse during that time...who knows. Btw, Dr. K didn't recommend the steroid burst for dx purposes as he was already 95-100% sure PANDAS from a clinical dx standpoint. And we didn't do abx because we were already seeing them fail. We requested them only for some relief. We just did IVIG, which if abx isn't working, is about all that's left. So far, so good...but it's only been 3 days.
Have you consulted with one of the experts? (Sorry I don't know your history.) If not, do that. If PANDAS is confirmed as a clinical dx, then let them decide what to do & help guide you. I know some have said they had complete relief with steroids or they were lucky enough that it bumped the kid into remission. We had just a few good days & some symptomatic relief...nothing earth shattering.
Good Luck!
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First off...take a breath. You are totally normal (whatever that means) for a PANDAS mom.
Don't worry about obsessing over strep, but remember that it's the exposure & the activation of the immune system that sets off the behaviors...they don't necessarily have to have a positive result. So all those tests...precautionary measures & totally understandable. (You could always get some home quick tests.) And we're all definitely in PTSD mode. You are doing your best. Watching your other sons is good so that you can swoop in and get them help if you see PANDAS symptoms & hopefully nip it in the bud. Maybe try some of the natural products vs. abx on them for now. (I can't give advice there as I'm not sure what they are but have seen info about OLE on here.) But know that we're all in the boat with you and helping to row but occasionally just floating along because we're all too tired to hold the freakin' oars. I just did IVIG on ds(6) last Thurs & Fri. Right now, I'm still a bit numb. We've seen a few rages, but we've also gotten apologies for them (that's new). Still seeing other symptoms too, BUT it's not even been 3 full days. We did escape the killer headache & sickness (so I worry that if he didn't have those things then is that good or bad). And I expect I will be OBSESSING as soon as the numbness wears off...already created a daily spreadsheet to help track things to be able to report back to Dr. K. Overall, he's doing well. We've seen real smiles. Heard real laughs/giggles. His voice is even different. I have to believe that we did the right thing & that a year of abx will be okay. Fortunately, we found a new doctor who has read everything I've given him about PANDAS...he even left me a vmail on the 1st day of IVIG to say that he was thinking about us. I look forward to taking my son in there to his office soon so he can meet my real son & not the raging boy he saw at our first appt.
Hugs!
And...if I were you...I'd skip the party this year if possible. Try to do something fun as a family instead since that's what you really want to do. Even if it's something as simple as milkshakes from a drive-thru and looking at Christmas lights.
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Hey neighbor! I just read thru this and have make it quick becuz we are on our way home from Chicago after IVIG. (Has gone well, btw...will post more on that later.
). 1. Your kids win over your SIL. I have no problem cutting people out (family or friends) when it comes to PANDAS. She's the 1 who told you about PANDAS, so I think her reluctance is weird. Consider a new doc but try not to burn the bridge in the meantime.
2. Go to an urgent treatment for abx for both kids. They seem to treat a bit more aggressively to keep you from coming back.
Good luck! I'll write more later.
P.S. The MMR is 3 vaccines, so you got 5 vaccines. Not trying to make you feel worse...just being accurate. At least ya didn't do a flu shot too.
And maybe that's not an accident. (Not gonna go all spiritual, but it's weird the connections that happen. And I'm gonna leave it at that.)
Good introductory articles for a Psychology teacher?
in PANS / PANDAS (Lyme included)
Posted
NIH's article on microbes causing mental illness is short & sweet & to the point. That was posted back in Aug.