Alison Sez: Part six of a soon-to-be-concluded conversation about "A Father's Search for a Drug for Down Syndrome"

These are some of my thoughts triggered by the NY Times piece called "A Father's Search for a Drug for Down Syndrome" and the responses.  I decided not to strive for coherence, because that makes the stakes awfully high.  Instead, I'm sharing my process.

I'm a person with a lot of anxiety.  For most of my life, I regularly had panic attacks so significant that they got in the way of some life activities.  At one point, when I was in grad school, a psychiatrist prescribed me Paxil and Xanax.  They didn't work, and they had a lot of side effects (everything from weird sleep with Paxil to, you know, the risk of serious addiction with Xanax--and let me also say that when I'm having a panic attack, I have to take what is clinically known as a fuckload of Xanax for it to have an impact).  Years later, as a result of years of specific therapy, yoga, and other sorts of personal/spiritual work, I managed to turn a corner with the anxiety, and I haven't had a debilitating panic attack since...what...2004?  I'm glad I'm not taking a drug for anxiety.

I do take daily Keppra pills, which stop me from having seizures triggered by the brain tumor.  They have some side effects, but they stop the seizures, and seizures are a big deal, so they're worth it.

Maybelle and BiffleI reflect on these drug facts as I think about the possible drug for Down syndrome.  I don't have a strong opinion one way or the other.  Instead, I have questions.  I find myself wanting to determine whether or not I have a framework for determining when drugs are a good idea and when they're not.

Biffle and I have talked about this quite a bit, and so far we've come up with this:  drugs are a good idea when they perform an important function that you/your body can't perform without them.  There's no way that I can marshal enough willpower or therapeutic intervention to stop having seizures, so I'm taking Keppra.  Because the panic attack drugs didn't work for me, I found another set of solutions there--solutions that I find highly preferable.  If Paxil had worked like a charm, though, I suspect I'd be a person taking Paxil, and coping with the side effects.  So that's perhaps not a firm ideology, as much as an accident that ended up turning out well.

What does this tell me about the possible drug interventions for Down syndrome?  I'm not sure.  Here's the thing:  Down syndrome isn't a disease, and it doesn't need to be cured.  I value the ways in which Maybelle is different than typical folks, differences that may be linked to Down syndrome or may be linked to her own personal talents, her upbringing, the presence in her life of a bunch of funky, wonderful, weird people--etc.  I don't want those differences eradicated.  Furthermore, Down syndrome doesn't cause the sorts of suffering that panic attacks caused in my life.  To the extent that our culture is viewing Down syndrome as something that needs to be fixed, then I'm not on board.

If this drug would shift Maybelle's cognitive functioning in ways that would make learning easier for her, I just don't know what I think about that.  My initial reaction is that this doesn't seem important enough to me to justify the risk of drugs, or the risk of eradicating any of Maybelle's beautiful differences.  And yet Biffle, as an adult, has begun taking drugs for ADHD, and his experience has been that the shifts in his cognitive functioning are wonderful, sort of miraculous, like, "OH!  This is how people get things done in the day!"  (Perhaps he'll write about this.)

I have no problem with Biffle taking those drugs, because he's an adult making decisions for his own life.  So perhaps my easy answer to this drug question is that when Maybelle's an adult, she'll get to decide what sorts of medical interventions she wants.

Part one
Part two
Part three 
Part four 
Part five


Anonymous said...

I've seen similar thoughts w.r.t. cochlear implants and the deaf. However, one of the issues is that they are most effective when implanted in the very young.

My daughter developed a red golf ball sized birthmark at a young age on her neck. It was a hard to decision whether or not to try and persuade a doctor to remove it or to let it recede on its own. We went with the latter and two laser treatments to remove redness. I still wonder if I should pursue plastic surgery to remove the lingering remnants. And if so, when? Sure, she can decide to do it when she's older; but will she wish I would have been more aggressive?

krlr said...

Agreed & this is why I loved this series in that I had to take a look at my own bias - no one questions thyroid medicine or insulin but if the brain chemistry needs slight tweaking then you're either messing with Mother Nature or not doing enough yoga. I still don't know what the answer is, but lots to think about.

I think it's great that you were able to work thru your panic attacks & would love to hear about Biffle's meds & how he came to take them

Anonymous said...

How can you say Down Syndrome does not cause the kind of suffering that panic attacks do when you do not personally have Down Syndrome? I know you are the parent of a child with Down Syndrome but that does not give you the identical perspective of a person with Down Syndrome. Perhaps being smart enough to see and understand the way Down Syndrome may limit a person (for instance it may limit a person's ability to live completely independently/to have true adult autonomy as a person, to have children, etc....)as many people with Down Syndrome are, does cause it's own form of suffering. We are all aware of our own limitations in life; of course we all have them. But most "typically" developing people can fulfill our biological and social destiny to live as free and independent adults and start families if we choose. I know many people with Down Syndrome do live quite independently and have fulfilling lives, but there is also the reality that many people with cognitive disabilities are nevertheless plenty perceptive enough to observe what they are missing as a result of their cognitive challenges.

I guess I just think it's a little patronizing of you to talk about whether or not people with Down Syndrome suffer at all as a result of having DS when you are not a person who has it.

Anonymous said...

alison, curious about your thoughts on this organization, which I've only just heard of: http://www.thesparkleeffect.org/

the inclusion aspect--focusing on ability rather than disability--seems positive. but, does that run the risk of washing over the very thing that makes a person different? cheerleader business complicates this question for me. a rhetorician by training, my only reading in dis/ability studies has been on this blog and a few academic articles here and there, so I'm not widely-read enough to understand how organizations like this might be situated in bigger conversations.

Cate said...

I really don't know where I come down on this question. But, I don't think I agree that cognitive function isn't that important. I mean, if my daughter's cognitive abilities can be improved enough so that she can live independently, I want that. (Not to say that she can't live independently anyway, but...how many people with DS do? really truly independently?)