Be angry.

Yes. I said it. Be angry. Be outraged.

http://www.youtube.com/watch?v=tfkscHt96R0&feature=youtube_gdata_player

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Kansas to Pregnant Women: “A Little Lie from Your Doctor Won’t Hurt You”

Kansas to Pregnant Women: “A Little Lie from Your Doctor Won’t Hurt You”.

How much longer are we going to pretend the medical community doesn’t have an agenda?

I don’t trust doctors. Some would call me paranoid. Some would say I’m overreacting. I wonder how much longer they’ll be able to hold on to that theory.

Legislators, supposed christians and state leaders, have sent a message. They don’t give a shit what you think. They don’t give a shit about the AMA. They don’t give a shit about ethics. And they sure as hell don’t give a shit if you trust your doctor.

It’s perfectly okay and encouraged to lie to patients.

Do you really believe it stops there?

This touches on many topics. I won’t even touch the religion in politics or the abortion issue as this is an autism blog but understand the entirety of my opinions for all three results in no one ever cares until it happens to them.

Pro-lifers believe abortion should be illegal but would they be okay when it gets to the point of arranged marriages? Not all pro-lifers believe that they shouldn’t be able to use birth control. Not every religious person will be okay with a doctor lying to them or others. Not every religious person will be okay with their bosses asking about their sex life.

How irrational are we now? No one cares until it happens to them. No one cares about our concerns or our children. No one wants to believe that this type of thing could actually happen in this country. The medical community couldn’t really be in the pockets of big pharma or the CDC. Politicians and money can’t really be what’s going on here. We can’t seriously be more concerned with reputations and appearance than the actual health of our children. There couldn’t possibly be an agenda.

Do you care yet?

It’s hard to believe I can still get angry even when I’m not surprised at all.

 

Allen Frances: DSM 5 Freezes Out Its Stakeholders

Allen Frances: DSM 5 Freezes Out Its Stakeholders.

Is anyone really surprised?

Fan-freaking-tastic. Really, you’ll love this.

NYT: New autism definition may exclude many – TODAY Health – TODAY.com.

“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”

Yup. Since we can’t make those pesky numbers go down as we continue to add those vaccines (hi flu shot to pregnant women, hello Gardasil!), we’ll just change the criteria and voila! No more ridiculous autism numbers climbing every year! We just knocked it back to 1:5000. Guess there isn’t an epidemic after all.

Or wait, try this one on:

Well, we don’t actually want to put any effort into studying things that actually help those with autism so we’ll just make it harder to diagnose people with it. Those crazy moms and dads out there that actually believe they are recovering their kids, well, they never had autism to begin with. See how that works? They actually had Social Communication Disorder. Yeah, we just made that one up for the new DSM, we thought you might like it. *pats themselves on the back* We wanted to make sure we could pull a lot of people out of the autism group and get those numbers down that way, too. Yanno, since we don’t want to do anything and all. Those of you with Asperger’s, good luck getting reevaluated and getting that autism diagnosis and for those with PDD/NOS…you already knew that was the diagnosis stupid doctors gave when they didn’t want to commit to autism because “he’s just a boy, they talk later” or “she’ll catch up with time” or “it’s just a phase” or “autism is not a good diagnosis, you don’t want that and it’ll keep us from having to give you as many services too. Yeah, you’ll never get that autism diagnosis.

And now we will have a severity scale so we can tell you exactly how impaired you are because you don’t know any better. So what if you can’t shower without being prompted or feel hunger? We’ll make you write notes to yourself and maybe you’ll remember to read them as they hang on the refrigerator of your, oh wait, we also took away your group home so you don’t have a refrigerator or walls in a dorm room to hang those notes. Sorry! We have to take your aide away too! I hope your parents are alive and able to take you in. Maybe you have an aunt or uncle? Distant cousin? Because you don’t get medicare or disability anymore, either.

See? It’s not really an epidemic! Because we just knocked those numbers back down and it’s all good now. No more autism. Because changing the criteria made them all go away. Poof.

And they call us crazy for doing things like giving them a gluten/casein free diet or some other such off the wall wackiness. Good lord, how could they deprive their kids of Wonder Bread?

How much more, exactly, does the AMA, APA and CDC have to do before people realize we aren’t that crazy?

**Don’t be surprised in a couple years when Social Communication Disorder is miraculously 1:90 with no services available.

When common sense isn’t enough: Vitamin A toxicity

This is a post I’ve been wanting to do for a while but I had to wait for permission from the mom.  Of course, my e-mail to her was buried underneath 2000 other e-mails so it took her a while to get back to me. I needed to ask because even though I won’t use her name, anyone on the same listserve will know who I am talking about and that could be unpleasant without permission.  Luckily, she saw my e-mail and gave me her blessing.  Big hugs and kisses to Mom.

I talk a lot about the necessity of common sense.  But what happens when you do use it and you still have problems?  This is an example of a mom that did all the right things but no one could figure out the problem.

Mom discovered DAN and found a doctor for her child.  Of course, she was very excited to get the ball rolling.  Her DAN did all the labs and gave out the basic supplement list to start on.

After going on for a bit, she starts doing more.

The problems started slowly.  She thought it was the antiviral at first because the symptoms started popping up after adding it.  That’s a reasonable first guess.  Maybe he’s allergic.

He continued to decline.  He got very sickly, cracked lips, started losing his hair, peeling skin, vomitting, the works.

Mom did the right thing.  She took her son to his ped.  The ped couldn’t figure out what was wrong.  Mom got referral after referral and really, no one could figure this out.  This boy saw a ped, a cardiologist and, I believe, an infectious disease specialist and an autoimmune specialist.  No one could find the answer.  He was tested for Kawasaki Syndrome and PANDAS, got an EKG, an Echo and hosts of other tests.

There were mulitple e-mails to the list for parent help and doctor’s visits – this is important to note.  She didn’t just wait for parents to tell her what was wrong with her son.  This is the perfect example of using common sense.  Don’t ever simply rely on parents to know the answers.  And don’t rely on any answers they give to be right.  We’re just parents, after all, not doctors.  Parents are for ideas and information and experience, not a diagnosis.

The first e-mails came in October.   This went on for some time and he just progressively kept getting worse.  She was terrified, and with good reason.  She went to doctors and she was still being bounced around to other doctors and specialists, all trying to help her figure this out.  Scary doesn’t even begin to describe it, as I’m sure you can all understand.  These are our babies.

One day, she sends one last panicked e-mail asking for help and feeling like the Worst Mom Ever.

Slowly but surely, we tease out more and more information until we can put the shattered pieces of this particular puzzle together. We all think she should stop everything in the meantime, at least until this gets sorted out.  We continue for the next day or two asking more questions and getting more specific and we finally hit upon it.

Picture of Vitamin A
Vitamin A molecule

I don’t call her actions outside the realm of common sense because we expect to be able to listen to our doctor.  Mainstream medicine encourages it, even.  The media encourages.  And doctors expect it.  How many times have you been poo-pooed by your doctor for mentioning something you learned on the web and they told you not to pay attention to it?  How many doctors told you vaccines were perfectly safe?  We want to believe in them.

I also don’t know the details of whether or not Mom told the many doctors she was sent to what supplements her child was on or the dosages.  I would hope the doctors she saw would’ve asked.

I also don’t know if this was a simple misunderstanding between her and the DAN that had not so simple repercussions.  Here’s the thing about misunderstandings:  if, in you’re mind, you fully understand, you’re not likely to ask questions.  There’s no way to use common sense in a situation where you think you already are – I think we can all relate to this concept.

She was giving toxic doses of Vitamin A.  Add that to the amount of Vitamin A found in CLO and the multi she was likely giving and she well exceeded the toxic dosage amount for daily use.  And she’d been doing this for several months.  The symptoms of toxicity just happened to coincide with her starting antivirals.  This is where being human is simply an epic fail.  She listened to her DAN and didn’t look up the dosages on her own to see if they were safe.  She didn’t expect to need to.  And when everything is going according to the way things are supposed to, she shouldn’t be expected to know and she should be able to trust her doctor.  But we all know that things never go the way they are supposed to go – we wouldn’t be autism parents if that weren’t the case.

She was giving 10,000 IU of vitamin A daily for about three months.

Symptoms of Hypervitaminosis A:


  • Abnormal softening of the skull bone (craniotabes — infants and children)
  • Blurred vision
  • Bone pain or swelling
  • Bulging fontanelle (infants)
  • Changes in consciousness
  • Decreased appetite
  • Dizziness
  • Double vision (young children)
  • Drowsiness
  • Fatigue
  • Headache
  • Impotence and ejaculation failure
  • Increased intracranial pressure
  • Irritability
  • Nausea
  • Osteoporosis
  • Poor weight gain (infants and children)
  • Skin and hair changes
    • Cracking at corners of the mouth
    • Hair loss
    • Higher sensitivity to sunlight
    • Oily skin and hair (seborrhea)
    • Skin peeling, itching
    • Yellow discoloration of the skin
  • Swelling of breast tissue in men (gynecomastia)
  • Vision changes
  • Vomiting

When we asked for dosages of her supplements, you could practically hear the collective yelling at computer screens:  STOP THE VITAMIN A!

No matter what, the thing is, she did everything right.  She went to doctors other than her DAN.  She went to specialists.  She didn’t sit around and let things get worse waiting for parents to tell her what to do.  The doctors didn’t have any answers for her, but she didn’t cry on the couch like we all wish we could.  She actively sought professional help.

I’m happy announce that her son is fine.  She stopped the vitamin A and his hair has grown back, his skin isn’t peeling and itching, and he’s perfectly healthy.  She’s very lucky that she didn’t continue this, the damage could’ve been far worse.  But he’s healthy and happy and doing very well now so there is a very happy ending to her ordeal.

What can we learn from this?  Don’t be afraid to question your doctor.  And don’t be afraid to google the dosages you are giving to your child of any supplement, no matter how trustworthy your DAN’s reputation is – mistakes happen.  DANs and mainstream doctors are all human, too.  Understand what it is you are giving to your child before you give it.  When you get your list to give to your child, look it up.  Look up toxicity levels.  Find out if you are being told to give it and then talk to your doctor about why that it is.  Many supplements simply don’t have a toxicity level.  Others do.  Know which ones do.

And before I get comments like, “lots of doctors prescribe that same dosage with no problems,” clogging  up the comments – yipee skippy and yay for them.  That doesn’t mean everyone can take that dosage – we all already know this:  each child is unique what works for one doesn’t always work for another.  This high of a dosage should be closely monitored by a doctor when prescribed.  Whether or not alternative medicine uses higher dosages, it doesn’t change the fact that there is toxicity and there is an amount that’s widely accepted as toxic for daily use.  Just because alternative medicine can offer beautiful and wondrous therapies, it doesn’t mean mainstream medicine is always wrong.  If she had known what is typically considered to be toxic, she could have made the choice to do it or not and if she chose to do it, she would’ve been on the lookout for toxicity symptoms and wouldn’t have gone through what she went through.  So please, this isn’t about arguing the merits of the dosage she was prescribed, clearly it wasn’t right for her son and no one was even monitoring it.

(I should mention that this post is in no way related to the High Dose Vitamin A protocol.  This protocol is two days only. There’s a big difference between daily dosing and the High Dose Vitamin A protocol.)

When there are problems and you need to see a doctor, don’t withhold information about what your child is on.  I have no idea if this happened here and I’m not making any assumptions, I’m only reiterating that you need to tell your mainstream doctors, no matter how much they hate biomed.  That information could be what saves the day.  In this case, she may have done just that and they just didn’t think to even do a Vitamin A test, I don’t know.  No matter what, the information is important, especially when your child is on the line – what they do with that information is out of your hands.

When I asked her permission, she was happy to give it, hoping to help others not make the same mistakes.  Mom has suffered a lot of pain over this and I appreciate her bravery in allowing me to tell you how easily it can happen to anyone.

Please give her a big round of applause and thanks for allowing me to tell her story.

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