Tuesday, March 2, 2010

Hope

In my last post, I quoted several times from an article in this week's Time, in which author Karl Taro Greenfield profiles Jenny McCarthy, prominent celebrity-mother proponent of alt-med recovery for autism.

I guess I'm not quite done with the article yet.

Greenfield sums up McCarthy's campaign with these words:
Of course, McCarthy is not a doctor. She really has only the one prescription: hope.

The article also quotes Age of Autism blogger Kim Stagliano criticizing her children's doctor for failing to offer that hope.
'I have three children on the spectrum,' says Stagliano. 'I have yet to really get one actionable piece of assistance from my pediatrician. They offer nothing. Nothing... These treatments are filling a vacuum.'

Joy and I have had our moments of this too.

It was just about two years ago, February 2008. And Joy hit a stretch of misery. She was having frequent seizures at that point, several a day, one-minute-long events that each carried an hour of inexorable unhappiness in its wake. But it was more than that. She was waking in the night to cry. She was inconsolable for hours at a stretch. She'd grab us by the hand and lead us to the front door -- but once we took her outside (into the frozen wasteland of February in Wisconsin), it was clear that she really didn't want to be there either. We came to believe that what she was asking when she led us to the door was "Take me away from here, to somewhere that will make me feel better!" And we had no means of doing that. We were helpless. I took her to Urgent Care, certain that there must be an obvious physical cause. Ear infection? Strep throat? But no.

Several days later found us in our pediatrician's office -- a capable woman, who'd done a good job with Joy's care to that point. I like her very much -- she brings a good combination of empathy and no-nonsense, plus an undercurrent of shared Christian faith. But that day, as Joy raged around the exam room taking divots out of the exam table with her teeth, the pediatrician had nothing to offer, beyond a weak suggestion that I should really seek out some respite help.

Nothing to offer. No hope.

That wasn't an answer I was prepared to accept. I began working my local network.

What kept me going through the next days were two conversations. One was a phone conversation with an expert from Agency 2, who also has a child on the spectrum. What stood out from my conversation with her was the sympathy, the "been-there-myself," and a suggestion of craniosacral therapy as something that had been helpful in their situation. The other conversation was with a friend from church with spectrum experience. She had several suggestions for pediatrician-switching.

Those conversations gave me the hope I needed, plus something to do. And during the days as I explored the possibilities of craniosacral, and the options for a new pediatrician, Joy's misery began to gradually ebb. On its own. And spring was coming. We were going to make it after all.

I'm grateful that the incident led us to a new doctor for Joy, even if he's across town. He specializes in special needs, and has parental experience on that score as well. We see him every 3 months as a matter of course. I don't expect to hit that "nothing we can do" wall with him. (Rose still sees Joy's former pediatrician, and I'm pleased that by "firing" her for Joy, we didn't lose our connection. In fact, her office got the H1N1 vaccine before Joy's new clinic did, and she called us to let us know and offer it to Joy!)

As for the craniosacral therapy, it became less urgent once we were out of the immediate crisis. We did eventually make the attempt later that summer, to no discernable effect, and blogged about the process in detail.

Interestingly, Joy's initial pediatrician was actually "right," in a way. Joy made it through the crisis without medical intervention -- we needed to do... nothing. And respite was a sound idea! But the lack of other ideas, and the lack of hope, was just not tolerable at the time.

So far, I'm sounding like I'm resonating pretty strongly with Kim & Jenny. And up to a point, I guess I am.

Here's where it differs, though. The hope I was seeking was not cure/recovery from autism. The hope I needed was for a livable life. For me, those two ideas are not the same. Our new pediatrician isn't offering recovery/cure. But he does offer expert medical guidance as we seek a path for a meaningful, joyful, potential-fulfilling life. We're grateful for that.

I'm wondering a couple of things, as I remember that sequence of two years ago.

One: would it have been helpful for Joy's former pediatrician to offer some form of placebo? Even if she didn't believe in it herself? After all, hope is what was needed...

Two: do parents of children with known genetic conditions (Down syndrome leaps to mind) blame their pediatricians in the same way that some parents in the autism community do for not being able to offer a cure?

I'd have answered "no" to the second question, but after having heard the LEND presentation on vitamin therapy for Down syndrome (to be blogged about soon), I'm no longer so sure. Though if that level of blame & conspiracy-thinking is happening, we're not hearing about it in the popular press in the same way.

What do you all think about placebos, and about what level of blame is fair to heap upon pediatricians, or upon Western medicine in general?

5 comments:

jess said...

these are such thorny issues.

i'd hate to see pediatricians - or anyone for that matter - pushing placebos, nor do i think that anyone should be doling out the kind of hope that implies that if only parents work hard enough and try enough then 'recovery' is assured.

but that doesn't mean that the mainstream medical professionals should be able to abdicate complete responsibility either. if pediatricians and neurologists continue to shrug and put their hands up, the jenny mcarthy's of the world will continue to fill the vacuum.

TheRextras said...

jess says it accurately and succinctly.

As have you, JM. Hope is the critical compliment to skepticism. Physician performance for handling the balance is mighty individual and parents (all patients) have to meander the medical minefield.

Similar thorny discussions are occurring in parent circles discussing treatments for cerebral palsy and structural brain damage. Repeating my interest in your report on the presentation on HBOT.

I've read a bit from parents of children with Ds also - where the cure crowd is smaller, the pressure to terminate in pregnancy is real and common, and the counter pressure towards social acceptance tops the other issues. Persons with Ds are the face of the r-word ban.

I can't quite fit the word 'blame' into an answer to your question. I truly believe it is possible to give patients and parents the facts and an opinion while allowing an open-ended projection of the future and a decision by the patient/parent. (The 'art' compliment to the science.)

If the p/p is expecting a definitive answer, their response often includes some blame for their disappointment.

Thank you, thank you, JM for your excellent writing and informative posts. BRatK

rhemashope said...

thank you, joymama, for this story of hope. it's a reminder to me that God carries us through the most difficult times. i'm thankful that joy no longer suffers from frequent seizures!

TheRextras said...

Came back to share a late comment on another post:
http://lovethatmax.blogspot.com/2010/02/i-stared-at-adult-with-disabilities-and.html

This from a non-blogging Mom named abby who has a child with autism: "But it's hard: our expectations for our children are, by definition, so high because we have to have hope, but as the days and weeks and months pass, we also can't afford to hold out as much hope as we once might have because hope, when dashed, really hurts."

Living on hope without supportive facts can lead to a sad crash. With time reality (tinged with hope) can be accepted and understood as not as bad as when it was first projected. No?
BRatK

blackknightsbrood said...

:(

"We came to believe that what she was asking when she led us to the door was "Take me away from here, to somewhere that will make me feel better!" Oh, I felt this line. Grayson tries to 'rub' her hurt off on me, like when she has a cut or an ear infection. I wish it worked.

"The hope I was seeking was not cure/recovery from autism. The hope I needed was for a livable life." And this one. The former is on the back burner for me - there, but not the focus. The focus of my hope is in the latter part of this sentence. In fact, it's more than hope. We're actually there, and it's a really good place.