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.