A Very Special SFL: PANDAS and Rheumatic Fever

So, I don’t normally blog about personal issues, but I am making an exception here because I think that people should know more about unusual reactions to the Strep A bacterium.  Our oldest kid was diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (or PANDAS) when he was 7.  You can read more about PANDAS here and here.

Basically PANDAS works like this:  young child has sudden onset of acute OCD symptoms caused by antibodies produced in reaction to Strep A presence that ‘misfire’ and attack things other than the bacteria. And, generally speaking, the child will have mild underlying OCD, which is exacerbated in a PANDAS situation; in other words, most believe that PANDAS doesn’t cause OCD (though there is some thought that it might) so much as it exacerbates it.

In our case, we had no idea that our child had either strep or OCD . He just suddenly went crazy. It was very scary and not helped at all by a pede who told us to just give him some benadryl to make him sleep. We had no idea what was going on and had never heard of PANDAS. A colleague heard about our situation and asked what the strep test results were; when we said our child did not have strep, he told us to get him tested ASAP. So I immediately took him in and demanded a strep test, to which the pede scoffed and said that he thought I was ‘grasping at straws’ if I thought PANDAS was really the cause of our issues.

We got the test anyway and sure enough, he had strep.

By the time the second dose of antibiotics was taken, our child was almost back to normal.

We have had several more incidents of this since and treat separately for OCD, as well. We have routinely had him swabbed whenever someone around us gets strep; in addition, we have been swabbed. We only recently found out that he should have been getting ASO titer blood work done. But supposedly he will grow out of this.

Researchers have looked to rheumatic fever in understanding how PANDAS works, as rheumatic fever is another situation where the antibodies produced to fight strep go haywire. In the case of RF, the antibodies attack heart valves, joints, and other parts of the brain.  Which brings me to the second chapter of this very special SFL episode.

About four years ago or so, I suddenly had acute joint pain and a fever; the fever lasted a few days, the joint pain lasted several weeks. I also noticed that I had gotten a weird little nodule on my knee. I went to the doctor thinking that I had just picked up CSV or Fifth disease from the kid, as both cause those sorts of symptoms in adults. I also wanted to make sure that I didn’t have mono. Anyhow, doctor essentially said I was fine. End of story.

Two years later, when I was pregnant with our second child, I had a fever and joint pain. Joint pain was chalked up to pregnancy; fever to walking pneumonia. I also had a heart murmur (not rare in pregnancy), erythema (weird and chalked up as nothing), fainting spells, dizziness, and heart palpitations.  All were considered just part of a rather difficult pregnancy.

Since then, I have had approximately 6 more incidents of sudden onset of high fever and extreme joint pain. I was tested for various things like Lyme Disease, rheumatoid arthritis and lupus – all negative.  I was shuttled around to various doctors until I was ready to give up. After a year, they finally sent me to an epidemiologist, who was very thorough and interested in my symptoms, especially when I told her about my son’s PANDAS. She ran a ton of blood work and informed me a couple of days ago that my ASO titer test (the first one that had been done on me, apparently) showed extremely high strep antibodies and that it looked like I may have or have had rheumatic fever.

RF basically manifests in two ways – migratory arthralgia and carditis. I don’t feel like going into all the details, so you can read more about RF here or just Google it yourself. Long story short, it is rare and it sucks, though it certainly is not as bad as many other things. I am currently in the process of getting in to see a cardiologist so that we can see if there is any cardiac damage, which would be a lot easier if I could just make the appointment myself as I have already been informed that April and May are “filling up fast.”  But of course I have to wait for my GP to do it.

So, do I have it or have I had it? Right now, we are at the “looks like it” stage and won’t know what, if any damage there has been to my heart until I see a cardiologist. But IF it is indeed RF, then I have had multiple incidents of it – as many as seven or eight, to my knowledge.

Yeah, RF is rare. But it isn’t like we don’t already have a House of Weird Strep situation. Not to mention that over the years, I have repeatedly asked my various doctors, who all knew about our son’s PANDAS, whether I might have latent strep, whether it could be strangely manifesting, and whether it could be causing my symptoms.  I even specifically brought up RF on at least one occasion.

And really, I may not have RF at all. I could just be freaking the fuck out over nothing. And even if I have/have had RF, I may not have any cardiac damage. I am keeping my fingers crossed. But if there is damage, it pretty clearly could have been prevented.

So, my point in this is that you should always trust your instincts that something is wrong. If your kid suddenly starts acting completely nuts, force your doctor to run a strep test (including a rapid, 48 hour culture, AND ASO). When you know that something is wrong with you, don’t get discouraged when they keep finding nothing amiss. YOU know when something isn’t right, so keep at it until you find a doctor that takes you seriously.

At any rate, I am going to take a bit of a break from blogging, though I will update this when I find out about the cardiac issues. I am sure that everything will be fine, so don’t worry about SFL. I am pretty sure that most lawyers don’t have hearts to begin with.

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ETSU Health Care Forum TONIGHT

Tonight ETSU is hosting a Heath Care Forum at the ETSU Culp Center Forum, from 5-6:30 pm.  The panel will consist of:

  • Former Congressional Representative David Davis, founder of Shared Health Services
  • Dr. T. Watson Jernigan, local Ob/Gyn
  • BCBS Vice President Calvin Anderson
  • Heidi Davis and Mike Clark for College Dems
  • Ryan Mills of College Republicans
  • Aubrey Childress from Public Health Student Association
  • Tracey Alice Berry, local attorney

So this should be interesting. I hear the attorney is a crazy pro-reform socialist liberal.  Be there or be L7…

People Over Profits

Your ‘Patriotism’ is Depressing Me

More teabaggery outrage. This time, they are outraged that people would have the temerity to believe that access to healthcare would have saved the lives of their 24 year old daughter and unborn grandchild AND then talk about it at a meeting on healthcare reform.

Last week while researching claims from a local Tea Party activist, I found myself asking a family for proof that they had lost an unborn grandchild.

The family, Dan and Midge Hough, of Chicago, spoke in favor of health care reform and in support of U.S. Rep. Dan Lipinski (D-3rd) at a Nov. 14 town hall meeting in Oak Lawn.

Their daughter-in-law, Jenny, and an unborn grandchild died recently due in part, they believe, to a lack of health insurance. They said Jenny was not receiving regular prenatal care and ended up in an emergency room with double pneumonia that developed into septic shock. Her baby died in the womb, and Jenny died a few weeks later, leaving behind a husband and a 2-year-old daughter.

Catherina Wojtowicz, of Chicago’s Mount Greenwood community, an organizer for a Tea Party splinter group, Chicago Tea Party Patriots, falsely claimed that the Houghs fabricated their story. In an e-mail, she called them operatives of President Barack Obama who “go from event to event and (cry) the same story.”

When the Houghs spoke at the Lipinski event, some Tea Partiers ridiculed them. They moaned and rolled their eyes and interrupted. Midge Hough began to cry.

The audience, Wojtowicz later explained, was exasperated by stories of isolated tragedies that cloud debate over the health care bill itself.

You can read the full article here.

Here is the video. Starting around 1.58 is when Midge Hough speaks about losing her daughter and unborn grandchild.

I am so very tired of this shit. Can we just get rid of all the bullshit and agree that it comes down to ONE issue: whether or not we, as represented by our government and tax dollars, have a duty to ensure that EVERYONE has access to healthcare?

If you don’t give a fuck that people go into bankruptcy because of the exorbitant costs of healthcare; awesome. If you have no problem with people dying just because they cannot access the healthcare system; then cool. If you are fine with the status quo and think it is just wonderful that we allow insurance companies to profit grossly by controlling access to the most basic needs of our citizens; fabulous.

But let’s be honest – your primary motivations are your own interests. You don’t want to be financially responsible for the welfare of others. I understand. I totally disagree, but I understand. However, don’t tell me that PATRIOTISM is the reason behind your belief, with the express implication that people that desire otherwise are somehow selfish/elitist/socialists simply because we believe that our government should act in the best interests of everyone.

Patriotism is the state of caring deeply about one’s country. But what the self-proclaimed ‘TEA party patriots’ don’t get is that there is a great distinction between individual subjective desires and the objective interests of our “Country.”  Our country isn’t defined by lower taxes. Or christianity. Or whatever personal belief or interest you wish to promote and protect. This country is objectively defined by its citizens and their collective work, creativity, ingenuity, and well-being.

If you feel that this country is going in the wrong direction, then do something about it. However, if you don’t like the direction it is going in because of the adverse effect it has on you, even though the direction is inarguably better for many others, don’t try to pretend that you are being selfless patriots. Because you aren’t. You are simply acting to protect your own interests.

So sack up and be honest about it.

FAIL of the Week, November 16, 2009

FAIL of the Week goes to the 42 House members that blithely allowed Genentech to stick its greedy, corporate hand up their butts and use them as shill puppets.

In an interview, Representative Bill Pascrell Jr., Democrat of New Jersey, said: “I regret that the language was the same. I did not know it was.” He said he got his statement from his staff and “did not know where they got the information from.”

Way to go!

 

Venus_Unicorn_Hand_Puppet

Bestest Hand Puppet EVER

 

 

 

Wal-Mart Is Pure Evil, Part 784

So, it will probably come as no surprise to someone who has read this blog (being that most people who read this blog, all 7 of them, actually know me) that I loathe Wal-Mart. In my entire life, I have been in a Wal-Mart exactly once and have bought exactly one item from Wal-Mart. Strangely, this was on my wedding day. And yes, I am flaky enough to worry that this act was just asking for bad luck. And even though I love my husband to teensy little crunchy bits, I would not be at all adverse to hearing tips on getting rid of any bad spirits, luck, mojo, karma, whatevs incurred by this unwise action that SFL readers might have.

But aside from that one incident, I have been steadfast in my intolerance for all things Wal-Mart (with the noted exception of this delightful website, much of which is NSFW and/or may cause instant vomiting and bleeding from the eyes).  So, this incident sadly came as no surprise. Long awful story short, two attorneys were shopping at their local Wal-Mart with their adopted children, when one was stopped and accused of shoplifting. The couple was detained, separated from their children, put in cop cars, and ultimately were let go when a review of the security tapes CLEARLY showed that neither man had stolen a single Bic lighter. Yes. Wal-Mart had accused the men of stealing a pack of Bic lighters.

Nonetheless, Wal-Mart banned both men from its hallowed environs FOR LIFE. Setting aside the fact that this is really in the best interests of everyone because NO ONE should be shopping at Wal-Mart, this is still asinine beyond belief. Nor does it end there. AFTER the men were cleared AND banned, Wal-Mart inexplicably SENT THE MEN A BILL FOR $158.40, presumably to reimburse Wal-Mart for the pain and suffering it incurred while unfairly detaining and accusing the couple and harassing their children.

Lest you leave my blog filled with rage over the PURE EVIL OF WALMART, let me leave you with this delightful and completely true anecdote.

Unsurprisingly, I have managed to pass along my negative opinions on Wal-Mart to my spawn. It isn’t like I tell them Wal-Mart is Satan’s favorite place to shop or that they will go blind if they shop there, but I make it clear that Wal-Mart sucks, and we don’t shop there for legitimate reasons. Some of those reasons apparently stuck in the quick and brilliant little mind of Spawn #1. When he was five (YES, FIVE), his grandmother (yes, that one, who is also the person who relayed this incident to me and did NOT find it amusing) decided that she was going to take #1 with her to Wal-Mart. #1 was NOT happy with this, and made his unhappiness known, but ultimately (because he is very reluctant to offend anyone) went along with Grandma.

#1 walked into Wal-Mart with a great deal of discomfort, I am told. Once he got inside, he looked around until he found a Wal-Mart employee. He then went up to her and tugged on her sleeve. When she asked him how she could help him, #1 asked HER “Are they treating you okay here? Do you have health insurance?”

I do not make this shit up. He has also tried to unionize our local Panera workers.

000_0007

World of K

Roe, Corker Not Impressive

So, KPT Times-News has this enlightening article about Roe and Corker’s response to Obama’s healthcare address.  My favorite part is this:

Roe, a first-term lawmaker who has been doing a number of TV network interviews lately on health care reform, said he still wants to have a meeting with the president.  “He needs to sit down on a bipartisan basis, which he has not done,” Roe said of Obama

So, let me get this straight: when Republicans refuse to give on an issue, Obama/Dems are being partisan for disagreeing. When Obama/Dems refuse to budge on an issue, they are being partisan for not giving into the Republicans. Thanks for clearing that up, Dr. Roe. I was pretty sure that bipartisanship meant working together. Now I know that it means Obama is supposed to take time to sit down with a “freshman” Rep who has made it abundantly clear that he will never support the President’s plan. If you aren’t willing to consider a public option under ANY circumstances, then what do you have to talk about?

Call us when you can figure out how the working poor and middle class are supposed to come up with $15K every year to fund your “wonder” HSAs.  

 

Congratulations Signs in Roe's Yard - 2 Days Before the Election

Congratulations Signs in Roe's Yard - 2 Days Before the Election

Don’t Let Us Down Obama…

HEAR US CONGRESS AND OBAMA.  We elected you to do a job.  We did not elect you to give in to a bunch of screaming jackholes.  The reason that healthcare reform has gotten so “complicated” has little to do with the form of proposed bill HR3200 or its content. The majority of opponents would have problems with ANY bill put forward by the current Congress and supported/requested by the Obama administration. Simply put, their base issues are with Obama, not “ObamaCare.” Don’t get me wrong – I have seen a handful of opponents with legitimate concerns regarding the text and provisions, but the overwhelming majority wouldn’t support anything put forward by Dems and/or Obama. Under ANY circumstances.  Either they fear and loathe Obama/liberals/change, or they don’t believe that every American is entitled to necessary medical care.  

QUIT LISTENING TO THEM.  There is NOTHING you can do to please them without alienating those who elected you.

The House bill is still working its way through the committees and still needs some work, and I for one would like to see some assurance and tort reform is also forthcoming. But make no mistake: attempting to make concessions to those who are adamantly opposed to “ObamaCare” will end in futility. This is NOT what the majority elected Obama for. Any bill that does NOT contain a public option is insufficient.

We gave you a mandate – NOW USE IT.

 

Obama is Our President

Obama is Our President

Signs of the Times…

So, I couldn’t make it to the most recent town hall meeting due to fever delirium.  However, I am told there were a large number of progressive folks there.  I may have some video to post later.  But until then, Ash-Lee, activist super-hero and all around decent human being, has graciously allowed me to post her pictures from the event.  As usual, it appears that people are strongly opposed to abortion, progress, non-whites, non-christians, spelling, grammar, and common sense:

 

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And my personal favorite:

So, all you anti-“Obamacare” folks out there still want to tell me this has NOTHING to do with race?  And what about this recent bullshit about Obama’s scheduled speech to schoolkids?  “Indoctrination” and “nazi mind-washing”?  Are you people insane?  I am sorry, but there is NO WAY that this sort of crap is not at least partially race-based. Where was this fear and rage before? From now on I am calling it like I see it. Gloves off.

These are people who are afraid that they are losing their white christian hetero male advantage. They see a black President. They see hispanic folks at their grocery stores. They see gay couples on t.v. They see women in roles of power. In other words, they see change is coming and that there is NOTHING they can do to stop it. But that isn’t going to keep them from letting the wealthy and corporate interests use their fear and manipulate them. That won’t stop them screaming about ‘healthcare’ or ‘taxes’ or ‘constitution.’ Two of which have always favored the white and the wealthy. But you know what? The Constitution favors NO ONE above anyone else. We are ALL entitled to its protections. So suck it up people. You had your chance. Change is here.

Bet you wish you had been nicer…

Teabaggery

So, another national non-religious holiday is coming up, which means (at least in these parts) another round of the teabaggery.

What a wonderful exercise of at least 2 of the rights protected by the 1st Am. Yes, let’s protest paying income tax and giving up our hard-earned money to “those” people.  Let’s ignore the fact that the ‘I got mine’ crowd didn’t get theirs on hard work alone.  Let’s ignore the fact that we are protesting in a public park, payed for with taxpayer money.  Let’s ignore the fact that we got to where we are by benefitting from public education.  Let’s ignore the fact that 60 years ago, folks were able to become homeowners thanks to government intervention and regulation and that home prices have increased roughly 100% every ten years, while income has most certainly NOT increased as such a rate.  Let’s ignore the fact that the Reagan years removed the ‘shackles’ from our beloved free market so that the credit market could grow like kudzu, creeping into everyone’s lives.  Let’s ignore the fact that the cost of living has increased in leaps and bounds while income increase has lagged further behind every year, making credit a necessary evil for the average consumer to pay for things like groceries, healthcare, education, gas, and utilities.   

And, most importantly, let’s ignore the fact that a large percentage of these people are motivated by fear and anger and that their ignorance and fear and anger is being exploited and manipulated by corporate interests.  

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Post Town Hall Post

There were only a handful of people protesting outside – one person for reform, and a couple that were opposed to ObamaCare and socialism/communism.  Very peaceful.  I did not see anyone carrying, and unless I am wrong, they couldn’t carry concealed anyway, as this took place on a public school campus (if I am incorrect in this, someone please let me know.  I don’t know the carry laws as well as I used to since I don’t own a gun or have a valid permit anymore).  

Inside, it was crowded – VERY crowded.  The room was large and seated several hundred.  I was conveniently located right behind the “question” mike, thanks to Ash-Lee, who kindly let me sit with her.  Roe spent a fair amount of time running for re-election, which can only be expected from a house rep, and I am not knocking him for that.  I just didn’t particularly enjoy it and couldn’t help but think how very different it would have been if it were my husband up there (well, there would have been a lot more guns, for one).  There was a lot of patting on the conservative back, again, expected.  And a lot of talk about how DC is politics as usual.  Some comments about “clean” coal, about how Roe did not take any special interest money, his pro-life stance, etc.  

It seemed pretty clear to me that Roe knows he is going to face a battle in the primary and that he knows that if he is going to win that primary, he is going to have to spend the next 18 months catering to the tea-party folks and the Davis supporters – notably NOT the people that got him elected this time.  I think he understands that he wrested the nomination away from Davis by somehow convincing democrats that he was a better choice.  You may feel free to disagree with me on this, but I think the voting results very clearly show that if no democrats had crossed party lines to vote for Roe, then Davis would have won.  I am not bitter about this, I get the frustration, but I just don’t believe folks thought this through.  Certainly they should have known that they were just being courted to win the primary, and that as soon as he was elected, Roe would then be forced to spend his time currying favor with the bitter Davis supporters.  An east TN republican might be able to win a primary with some Dem support, but you can’t win a general election that way.  Just ask the Democratic candidates.  At any rate, I hope the Dems are paying attention right now.  Come 2010, it is going to be another battle royale in the Republican primary, reportedly again between Davis and Roe.  So, where is our 2010 candidate?  NOW is the time to get her visible.   It would be very smart for all Dems to get behind a candidate NOW.  Just sayin’…

But I digress – the meeting.  The overwhelming majority of the signs were anti-abortion, though many were apparently anti-grammar, as well.  See supra.  Yes, I judge people when they use poor grammar.  See ‘Things you should know before reading this blog.’   The first questioner has received an unnecessary and undeserved amount of negative attention for being shouty.  She was loud, yes, but she was clearly nervous.  She was not insulting, she was not rude.  She was impassioned and nervous.  And she did NOT start screaming until people started booing her – a lot of very loud booing and rude heckles from the crowd.  And Dr. Roe’s rather rude treatment of her did not help.  There were some good questions, a lot of non-questions, some rambling nervous people, and, as always an American expert or two on ‘how things are done in Europe/Canada.’ Overall, it seemed that there were markedly more pro-reform questions than anti.  

And then there were Roe’s “answers.”  This was rough.  Especially when he insinuated that HR3200 would allow free state on-demand abortions.  And that HR3200 raises valid concerns of ‘death panels.’  Come ON – I know you have to pander, but really?  This seemed especially shameful and unnecessary, especially since every third sentence he spoke was ‘This is not about Democrat or Republican’ and every time there was a pro-reform question he kept insisting that it was not a partisan issue and/or it was the liberals who were making it about parties.   And then the policy stuff.  Particularly listening to him try to sell folks on the HSA farce. You can CONTROL your own care! And by ‘control’ he means ‘pay for.’  So, yep, you can ‘control’ your care, but only if you can afford it.   Kind of like one can “control” their debt by filing bankruptcy.  Or ‘control’ your kids by not having them.  And then to try to sell the uninsured and underinsured on the tax credit and voucher option?  First, if you can’t afford health insurance, how on earth are you going to pay for it, then wait 14 months for a credit on your income tax returns?  If you are among the working poor, this isn’t going to help you anyway.  You need the money and the care; a tax credit doesn’t help people in the lower brackets – if you are low income enough to receive earned income credit, then a “credit” for paid health care does NOTHING for you.  

But none of this matters, apparently, for as Roe made clear, of the 48 million uninsured, 11 million of those are illegals and don’t “deserve” insurance and a “large number” of the rest have all chosen to be uninsured for some reason, probably as a patriotic protest against socialism, I don’t know.  And of course, as I know from watching the interwebs and whatnot, all the rest of the uninsured are lazy drug addicts.  So really, as Dr. Roe’s own handout stated, he is mainly concerned with “Preventing the destruction of a system that works for 80 percent of Americans to extend coverage to the remaining Americans.”   Some People Not Politics.  

 
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