Surreality Bites

(I can show you the teeth marks)

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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.

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You can join the class action suit, as the school has plenty of documentation that will be court-accepted to prove sweetpea has developmental issues. Schools must document everything.
I doubt if you see any money before the kidlet turns 30...those things drag on and on and on.

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"

Considering all i was going through when I was pregnant with Ian, I'm almost surprised I wasn't put on an antidepressant. I probably wouldn't have taken one anyway because I didn't like the idea of taking something like that when pregnant. Of course the suicidal thoughts I had would've also hurt my baby had I followed through. For me it goes to show how bad of a doctor I had while I was pregnant because he didn't look at any of my recent life history. He didn't even suggest an antidepressant. I know it's for the better but it still pisses me off.

I agree that you should talk to the lawyers doing the class action suit and see if right now you have enough information to join in. If so any money awarded could go to help Sweet Pea, even if it does up just being enough to buy next years school supplies. You probably won't get an apology but at least you can be part of getting things changed.

I was on them before I got pregnant, and my doctor left me on them. When I did wean myself off of them while I was breastfeeding him, it was my decision and I didn't consult my doctor. It was after I had decided she wasn't my doctor any more, but I was angry at her for other things at that point.

There is a family history of autism spectrum disorder and ADHD. He could have come by his issue "honestly" or his genetic predisposition could have been exaggerated by exposure to the drug I took during my pregnancy. There is no way I can ever know. I'm going to have to sleep on this awhile longer while I decide what I want to do. If I decide to pursue it, I will need to get a diagnosis. That mean dealing with doctors, who I tend not to like or trust.


I don't know who I'm angrier at: myself, my doctor, or the drug companies. There's plenty of blame to go around.

“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.

The Ob was mistaken unless the above quote pre-dates 1995 which is when Paxil was made a category C drug.

My son is 6: it was 2004.

That particular doctor would later pressure me to have a C-section that I didn't want and turned out not to need. Shortly after my son's delivery, I cut all ties with her.

Have you seen The Business of Being Born? I have no desire to have a child at this point in my life, and may very well decide one day to live without birthing any children, but that documentary, as well as some other things I've read and seen, definitely made me quite suspect of OBs and hospital delivery. I've had several friends that have gone the midwife/home birth route and should I ever decide to have children, the "natural" option will be something I closely consider, for sure.

But yeah, you're right. Hospitals, doctors and experts are not always as trustworthy as we are led to believe.

Edited at 2011-07-09 05:25 am (UTC)

Given my druthers, I would have preferred a midwife: they have a lower maternal and infant mortality rate than doctors and I like the whole philosophy that pregnancy is not an illness that you need a doctor to cure you from but a natural process that woman go through.

I am a type 1 diabetic, though, and everything I read said that a licensed midwife would not touch me. In some countries there are midwife's who specialize in high-risk cases, but not in the US. They don't offer any training for such things here.

I belonged to the doctors, who did not really see me as a woman having a baby so much as they viewed me as a disease with an additional high-risk condition.

After 7 years, I still haven't written much about my pregnancy and my experiences with doctors. I still get angry when I think about it, and I'd cry all over my keyboard if I tried to write (I'm one of those women who cries when I'm angry; it looks like sadness to the casual observer, but it's really condensation from my boiling blood that happens to drip down my face).

Edited at 2011-07-09 12:29 pm (UTC)

And, no I haven't watched The Business of Being Born but I've read plenty of articles along that thread. I've savvy to the fact that medicine is big business that operates in the name of profits. The US has more than double the surgical births of other industrialized countries (33% verses 15%), and a higher infant mortality rate and maternal death rate to show for it. But, by golly, at at the the !@#$ing money being made! So why should they fix a system that works so well for the ones in power?

Sitting down and watching that movie would probably make me have to go outside and scream afterward. For, like, and hour or two, or however long it would take for my voice to give out. :oP

I mentioned already on facebook that I was on Celexa when I discovered I was pregnant. I had already at that point weaned myself down to 5 mg/day (the script was for 10 mg). My family doctor expressed concern when I told her I had stopped taking them. She told me to check with MotherRisk, a Toronto-based org that at the time had a number you could call to get a pre-recorded message about your drug of inquiry. I did not even bother, I just suffered through with my anxiety and depression (still do, I guess!)

I hope you get the result you need. I already mentioned before that my mom was on Benedictin while pregnant with me, which was banned in the US but not in Canada. I have been diagnosed with Asperger's and I have strains of OCD. I do not usually wish I had turned out differently, just with more money :)

My son's issues could have come from me. My brother has Aspergers. I think I have much milder symptoms of it myself, mixed in with some ADHD.

I should have had the good sense to stop taking the pills. It's hard not to kick myself for that.

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