Surreality Bites

(I can show you the teeth marks)

Previous Entry Share Next Entry
The Right Motivation
I have no faith in doctors. So-called “experts” have no credibility with me. I have no faith in labels and I never saw the point in getting one to stick to my son, Sweet Pea. After all, the school is working with him. I don’t think their diagnosis is on target, and I found the pediatric developmental expert at Texas Children’s to be inept useless in that she asked us a lot of questions but didn’t make very many observation of her own. The fact that she did not put him with other children to observe how he interacted (or like as not, failed to interact) with them to me meant that she did not actually observe much of anything.

My gut instinct is that he has a mild form of autism. A whisper of it. Just enough to cause him to short circuit when his sensory filters prove to be a bit flawed and get overwhelmed. His schoolmate, Jack, has almost identical symptoms to my son’s and he got a diagnosis of Asperger’s Syndrome. Jack does not have Sweet Pea’s “rule rigidity” (an insistence that certain things be just so) and he seeks out social connections with his peers, which Sweet Pea does not. Whatever Jack is, Sweet Pea is. Except more so.

Jacks parents could afford to pay for a specialist who charges $1200 out-of-pocket (she does not take insurance) to get a diagnosis. My husband and I are trying to work our way out of debt; we don’t have $1200 lying around to pay out of pocket for a specialist to give us a label I couldn’t see the need for.

Until today, that is. I just needed the right news to shine the light for me, and at last I saw a point a label from a doctor that fits with what my instincts already know. I will start looking for the money.

The news stories read: Use of selective serotonin reuptake inhibitors (SSRIs) by pregnant women may increase the risk for autism spectrum disorder (ASD) in their offspring, new research suggests.

That’s about the time my blood started to boil.

“I’m taking Paxil,” I told my OB doctor on my first visit, the one where she confirmed my pregnancy. “Do you think I should quit?”

“Oh, don’t worry about that. I don’t see any need for you to stop taking it if it’s working for you. They haven’t linked it to any side effects. It should be perfectly safe,” she told me.

A lot of this is my fault. I listened to my doctors, but not closely. I didn’t stop to think, at the time, that there is a difference between something being “proven safe” and something “not known to be dangerous.” If no one is looking for danger or testing for danger, they aren’t likely to find it.

There are class action lawsuits in the works. If I get my son a diagnosis, I could probably join them. Not that I expect to get rich. Only the lawyers filing the suits will get rich, and the plaintiffs will get a pittance for our pain. But this isn’t about the money for me; it’s about vengeance. And reform.

These antidepressants were not tested on pregnant women, but they were prescribed to plenty of us without question. Here is what I want: a clear distention to be made between “proven safe” and “not tested for safety in pregnant and nursing women; use with caution.” How hard can that be?

Instead of assuming that any chemical concoction that Big Pharma comes up is as safe for developing fetuses and nursing babies as it is for adults, we should ere on the side of caution and assume that it may not be. Fifty years after Thalidomide was withdrawn from the market after it was shown, we are still making the same damn mistake.

It’s hard to see danger when we are making a point not to look for it or at it. I would like to see a label on any drug where the effects on developing babies have not been studied that reads something like this: WARNING: The effects of this drug on infants in utero and newborns HAS NOT BEEN STUDIED. If you are pregnant or nursing it is not know if this drug may have a detrimental effect on your child’s development.

It turns out I took part in a large scale experiment to see if selective serotonin reuptake inhibitors had an effect on developing fetuses and nursing babies, only I didn’t know it at the time. I took Paxil until my son was about 3 months old, when I weaned myself off of them. Looking back, I should have paid more attention to the semantics: just because something has not been shown to be dangerous does not mean it is safe. Why should the drug companies look for danger when finding it can be so unprofitable?

At the very least, women should have the right to make an informed decision about whether or not they want to test a drug's effect or their children, or if they would rather demure. Because “this has not yet been proven safe” has a much different ring than “we don’t know about any dangers.” It just does.

* ~ * ~ * ~ * ~ * ~ * ~ * # * ~ * ~ * ~ * ~ * ~ * ~ *

  • 1
I don't want the money, I want an apology. And I want them to start warning pregnant and nursing women that just because the risks are unknown does not mean they are non existent.

I don't think either of these things are unreasonable.

not unreasonable, but unlikely.

I will caution you not to get sidetracked by this. It may ultimately prove to be causal and it may not. This is one study. Either way, you have to focus your energy on Sweet Pea.

And I"m not saying you shouldn't be outraged, because you should. But keep your eyes on the prize - and it's not a class action suit, it's getting Sweet Pea to have a happy childhood. The class action, if at all, will be later.

I have often been thankful (not sure that's the right word) that Maggie's issues were not anyone's "fault" because I fear all of my energy would have gone there.

I don't expect an apology. I'd like one.

The warning is not going to be issued by the drug companies, but my pharmacy puts all kinds of stickers on anything I pick up from then warning about this risk or that. The FDA has been rendered pretty toothless in recent years, but that needs to change.

An informed public is an empowered public. There have been a sharp rise in children with "these issues" in recent years, and the only real thing that has changed is the number of chemicals we are consuming. I don't see a problem in putting the well-being of our children ahead of the profits that drug companies make.

No doubt the drug companies do, but screw them.

Funny, because back when I was pregnant with the favoriteson and the smallbear, the only things I was allowed to take while pregnant were tylenol and sudafed. I know they have relaxed that, because the lilmama has a stapled packet five pages long of drugs she is permitted to take during her pregnancy.
The drug company would happily issue apologies, but lawyers want $$ instead. An apology can be taken to court as "admitting fault" so they legally cannot apologize.
They did not readily diagnose the autism spectrum nor aspergers syndrom years ago -- favoriteson is 26 -- he is "jack" to a t, but the only diagnosis available in his school days was "genious brat"

  • 1

Log in