Tuesday, March 30, 2010

When Doctors Disappoint (Or, Maybe Aunt Lizzie Was Right)

It's kind of ironic (my life is built around irony, if you haven't noticed) that today is National Doctors Day and I'm just back from one of the most disappointing visits to the doctor ever.

It started around Christmas, maybe earlier, I don't know, when Boo developed this hacking sort of cough whenever he would play the Wii.  It would seize hold of his chest muscles, and he'd erupt with this loud "heeeehhh!"  Just once and that would be it ... and then, no lie, 10 seconds later it would happen again.  Over and over and over again.

This can't be good, we thought, so like any decent parents, we took him to the pediatrician ... who pretty much advised us to ignore it.  A nervous habit, maybe a tic, something called exercise-induced asthma ... pick a diagnosis, any diagnosis! Chest sounded clear, breathing seemed ok, nothing to worry about. 

Still, this continued into this decade, and on and on ... so I made an appointment for today with our ENT at the Big Children's Hospital in the City about two hours away from us in rush hour traffic, which is what one always must travel through to get to Big Children's Hospital in the City because one needs to get the first available appointment with Dr. ENT. So, through the pounding rains, Boo and I set off this morning in the dark at 6:30 a.m. and made it with 10 minutes to spare before our 8:20 a.m. appointment.

An hour later, I was pulling out of our parking spot. Suffice it to say, Dr. ENT (who we generally really like, which is why I'm incurring the out-of-network insurance charges to take my son to him at Big Children's Hospital) was even less concerned than the pediatrician. We left his office with no more than a "nothing we can really do, just follow up with your pediatrician, see you in 6 months" nod and a handshake. Meanwhile, I get to live with this barking seal like sound every 10 seconds when my kid is playing the Wii (which I'm not inclined to have him give up because a) it is something he's good at and b) it is exercise on crappy weather days like this).

I hate to say this, but this is happening more and more often with my interactions with the medical establishment. There's this indifference, this unspoken notion that I'm wasting their precious time (as if my remaining 5 vacation days and the 1/2 tank of gas it took to get to Big Children's Hospital aren't precious enough). I don't always have the greatest of faith in medical professionals, and today only reinforced that mindset of mine. The Husband and I differ on this dramatically.  Whereas I will go weeks and months without refilling prescriptions, years without checkups (I mentioned to him last night that I think I need my eyes checked as it has been 7 years since my last prescription), he is vigilant about this stuff. (I should clarify that I am only lax on this in regard to myself, not my kids.)

This was kind of my mom's Aunt Lizzie's approach to medical matters. I never knew her, but from the stories handed down, Aunt Lizzie was a deeply religious woman who believed that all things could be healed with prayer and some old-fashioned homemade country cooking, be it soup or shoo-fly-pie or whatever, or an uplifting letter to a friend who was ailing.  No doctors or hospitals or medications for her, thank you. 

So I was thinking about Aunt Lizzie as I drove back home. Maybe there's something to be said about her approach, a trust in either one's instincts or a higher power. Blame it on the rainy weather, blame it on other factors going on in my life, and I'm beginning to question my ability to trust my own path, to successfully advocate for my kid.  (The nurse practitioner - who looked to be all about 11 years old - looked at me aghast when I mentioned Boo received zero services, despite being on the autism spectrum.  "In our state, he's not delayed enough," I said, as Boo folded himself into thirds and attempted to do a forward roll off the office chair.)

Back home, I found my solace in Facebook and all my mom friends with medical degrees from the School of Real Life chimed in as I threw myself a pity party.  One emailed to say that her son has the same exact condition, and that her pediatrician has said the exact same thing.  "It's hard to listen to," my friend emailed, about her son's identical coughing. 

She made me feel better than any visit to a specialist could have done.  She listened, she understood.  She made me feel like a decent mom. 

And if she lived closer, I probably would have invited her over this afternoon for pie. 

photo taken of Boo at the Storybook Ball (hence, the Superman costume he's wearing) at the Please Touch Museum in Philadelphia.  He's playing in the Emergency Room exhibit of the children's museum, pretending to look at x-rays.

copyright 2010, Melissa (Betty and Boo's Mommy, The Betty and Boo Chronicles) If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.


Kristina said...

Wish I could help,we only do adults...I work at that other big hospital next to the big children's one. Sorry us medical folks haven't lived up to your expectations...but I get it. It's super challenging and annoying sometimes, I even feel like that with my own physician :)

Doreen McGettigan said...

I can so relate to your concerns. My niece's baby is 16months old and has been sick since the day she was born. The doctors all made her(my niece) feel like there was something wrong with 'her'. She finally saw an ent..baby had adnoids removed and she was still sick. When the baby finally became lethargic it was time to go to the big city Children's Hospital. Within 4 hours they diagnosed her with kawasaki disease. Luckily (by the grace of God) her heart had not yet been affected.
I was in a car accident six months ago. Was told I had neck sprain. I vomited for 33 days and was in the emergency room 4 times before my family doctor sent me to a specialist..I had a severe concussion..I could have died..
I could go on and on but the point is I feel doctor's are not treating patients anymore, they all seem terrified. Is it the health care debacle and the fear of changes..are they terrified of being sued..have they all been given secret orders not to look for any 'diagnosis' and just treat the symptoms? It is all so frightening and my fear is it is going to get so much worse.
A Mom knows when her kid is sick. It is as simple as that. It is a shame that it becomes a 24/7 job for a mom to have to keep knocking down doors to get answers. We need reform but I am terrified that our leaders have just made a HUGE mistake and we are all going to suffer for it. We have to do our own research and diagnose ourselves before we even see a doctor.
Okay now I really babbled (touchy subject with me).
If your son's problem is concerning to you..then something is wrong! Perhaps it is as simple as his nerves. Go with your Mommy got and keep seeking until you are satisfied...

Melissa said...

Hey Kristina ... thanks for the kind words, and I hope mine weren't taken too offensively. I generally have high regard for all the doctors who take care of my kids - I love the Big Children's Hospital (and the one you work at too :) Today ... well, you said it best ... super-challenging and annoying, partially due to my own issues coming into play.

Lynn said...

Bah, doctors. Bad memories with my son's food allergies. My son dabbles in asthma, and coughs when he's tired. Just a simple "who knows, maybe it will help," but is there a warm drink he likes? hot cocoa? Maybe you can try giving it to him when he's playing. I think sometimes warm liquid can help that kind of thing from flaring. Hope it disappears!