Archive for the 'health' Category

What makes a great doctor’s appointment?

December 8, 2012

a stethescope with a Winnie-the-Pooh toy attached

image courtesy of pixel_bunny via flickr

Recently, Chloe and I had an appointment with her neurodevelopmental pediatrician. This is a fancy term for a doctor who deals with kids with disabilities. At these visits, we talk about everything: medication, nutrition, equipment, school and more.

Dr. K is the one medical professional who is in a position to help us see the big picture, to piece together medical issues like prognoses, medicines and therapies  with social issues such as school, caretakers and community access, and to balance all these things into a healthy, sane life for our little family. It’s quite a challenge. Which is why it’s so important that this doctor be awesome. And she is. Here’s why:

She is tuned in to Chloe.

Most pediatricians are good with kids, obviously. But I have been to appointments where Chloe was an afterthought. Dr. K talks to Chloe, on her level. Whenever she can, she includes Chloe in the conversation and addresses question to her, even though it would be easier to let me speak for her.

She understands that the most important thing she can do for Chloe is have a productive relationship with me.

It doesn’t matter how much education and expertise a doctor has; if she doesn’t have the respect and cooperation of her patient’s parents, her advice is useless.

I’m not afraid to reject doctors’ advice. I have told a neurologist to put away his Botox, because we’re not interested. I have left one doctor’s office only to call another and get a second opinion on medication dosage. I have thrown away prescriptions, canceled therapy appointments, completely ignored advice. And Dr. K understands. She must do more than make pronouncements. She has to win me over. And she usually succeeds, because

Her recommendations are based on our specific goals.

Every child is different, and every child with CP is really different. But many doctor’s and therapists use a blanket approach, treating every problem they see, because the more CP symptoms they can get rid of, the closer you get to normal, right? Tight hamstrings? Monthly shot of Botox. Lots of extensor tone? That calls for a Baclofen pump.

But interventions always come with risks and sacrifices. Medications have side effects. Surgery has risks. Every piece of equipment we get costs money that could be spent on something else. Even therapy appointments are a commitment of time that could be spent on other things.

In Dr. K’s office, we talk about problems, but we also talk about why and how and if we need to fix them. Chloe’s hamstrings are tight, yes. But what function will she gain from Botox? We could get a $2000 stroller with Medicaid funds, but how much would we actually use it? Is it a good idea to take Chloe to physical therapy after school instead of using that time on homework?  Dr. K is honest about the drawbacks, realistic about the gains, and respectful of my concerns and priorities.

She understands that we can’t do it all.

I was a little nervous about admitting to Dr. K that I hadn’t been using the knee immobilizers she had recommended to stretch Chloe’s legs. They were hard to put on, uncomfortable and inconvenient. And our lives had been too hectic for something like that. When I explained this to Dr. K, she surprised me.

“I am so glad you didn’t worry about those,” she said. “With everything else that’s been going on, it sounds like it was just too much for you, and I’m glad you can see that.”

Wow. A doctor who understands that her patients have full, challenging and complicated lives, who is able to see medical concerns in the context of the bigger picture–that is a rare and valuable thing.

She cultivates an environment of honesty and trust.

All of these things add up to a doctor’s visit where I feel free to really explore what’s best for Chloe. Because I know can be completely honest with her, Dr. K gets a clear and accurate picture of our lives. And because she respects my role as Chloe’s “real” primary  care provider, and because she respects my intelligence and decision-making skills, Dr. K can discuss treatments and interventions thoroughly, in all their complexity. She can be confident I will follow through on what we discuss, rather than forgetting everything the moment we leave the building. Our appointments tend to be long, but they are worth it.


Children’s hospitals can do better

November 6, 2011

an old neon sign pointing the way to a Children's Hospital

image courtest of roens, via flickr

It seems like every time a children’s hospital gets mentioned in conversation, someone has to talk about how wonderful they are, how they save kids’ lives. Well, of course they do, it’s their job. But like healthcare in general in this country, children’s hospitals need to do better.

I have several horror stories from our local children’s hospital. There was the time our doctor’s face turned white when he realized a nurse had put the wrong medication in Chloe’s IV. The time we spend 8 hours in the waiting room with a six-month-old whose head was covered in EEG wires, only to find out the wait and the wires were a mistake. And the time a neurologist assured us that one of the benefits of Chloe’s seizure medication was that she would swell up so much that our underweight daughter “would look fat.”

But one instance made me really understand the pitfalls of American healthcare, even when it’s in a hospital covered with bright colors and cartoons.

A couple of years ago, Chloe had a huge seizure that took a long time and a lot of drugs to get under control. In the emergency room of our suburban hospital, the atmosphere was of controlled chaos and supressed panic, especially when the doctor couldn’t find the right size tube to intubate her. Her oxygen level was dangerously low, and he finally decided to put in a tube that was slightly too small rather than deprive her of oxygen any longer. Then it was off to the Children’s Hospital.

There, the doctors explained that, while she no longer needed to be intubated, they wanted to leave the tube in for a few more hours, because they wanted to give her an MRI (because of past breathing issues, Chloe has to have a breathing tube when she is sedated for procedures like MRIs).

So the tube stayed in. And it became a concern to every nurse and respiratory therapist we saw, because it was too small. Air was leaking our from around it, making some machine beep all the time. Everyone told me it was no big deal, but they couldn’t stop looking at the numbers on the machine and discussing it among themselves. In addition, nurses were having trouble suctioning the tube–getting the mucus out of her lungs.

After several hours of this, we got the MRI. I had been tempted to refuse it, simply because it seemed like one of those expensive, unncessary procedures that hospitals are notorious for insisting on. The doctors explained that they wanted to check and make sure there wasn’t a new problem in Chloe’s brain that had caused the seizure. But there were already plenty of reasonable explanations:  Chloe has a brain injury and a history of seizures, and at the time of this seizure she had a very high fever.

I wanted to say no, but in that atmosphere, it was hard. How would I explain to the doctors and our family that I didn’t want to do everything they thought was necessary for my daughter? That I wanted to save taxpayer’s money (Chloe has Medicaid) rather than get a test they said she needed? So I kept my mouth shut, not realizing at the time that there were better reasons than money to refuse the test.

Hours later, after the MRI, the tube came out. Chloe wheezed and gasped, and it took several doses of steroids to calm her breathing. The respiratory therapist theorized that the smaller tube may have caused inflammation by moving around too much, and I realized we should have gotten that tube out hours before.

After a couple more days in the hospital, they sent us home. Chloe still had a high fever, but now we had seizure medication and an emergency dose of Valium to stop a big seizure–which I had to know to ask  for, since it wasn’t offered to us.

Hours after we returned home, Chloe had another seizure. We gave her the Valium and called an ambulance. At the hospital, she was diagnosed with pneumonia, and the doctor explained that it had several possible causes, one of them being the intubation.

The combination of seizures and pneumonia started a muscle spasm that racked her body for days, and when that finally ended, she had a sinus infection so bad she could hardly breathe. In all, she was very sick for an entire month.

Did that tube cause the pneumonia, and subsequently the second seizure, muscle spasms and sinus infection? I have no idea. But I do know that the MRI didn’t give us any new information, cost taxpayers thousands of dollars, and came with risks, like pneumonia from leaving the tube in longer, that were not discussed with us beforehand.

Yes, our children’s hospital save lives, but every time we’ve stayed there, we’ve been subjected to questionable procedures, thoughtless remarks, and just plain stupid mistakes. Children’s hospitals can do better.


June 9, 2010

Full disclosure: I get a discount on Chloe’s therapy for including links to ABR therapy sites and blogs by fellow ABR parents on this blog. I am not, however, required or encouraged to rave about the therapy, or say anything about it that I don’t actually believe.

So what is ABR, you may ask. Well, you should probably just go to the website; it explains it better than I could. When I talk to doctors, therapists, or other parents, I describe ABR as “a kind of massage.” And they all think that’s cool, if maybe a little wacky. I don’t say “it flies in the face of everything you think about brain injuries, cerebral palsy, spasticity and biomechanics” because, well, people don’t really like to hear that kind of thing.

Recently, Chloe and I saw a new doctor. When I mentioned ABR, she looked down at her lap and said “Oh.”

“You’ve heard of it?” I asked.

“Yes,” she said, carefully. “I think it couldn’t hurt, and it has probably helped her sensory issues.”

Sensory issues, whatever. ABR has little to do with sensory issues. Yes, it probably does help them, but that would just be a side effect. But the point is that yes, it doesn’t hurt. Unlike botox shots, baclofen pumps, surgery, and even physical therapy, ABR has few negative side effects. The only one is that it’s time consuming, and, for a parent like me with a wiggly kid, frustrating.

I can’t say for certain that ABR works. The ABR people are currently gathering information for a big study that will hopefully show benefits. But right now, anything I say falls under the category of “anecdotal evidence,” which means it could be a coincidental, or even my imagination. But I’ll tell you this. Before ABR, Chloe could not vocalize (except to cry) or reach for toys. She could not lift her arms past the level of her shoulders, and she couldn’t pull her head forward at all. Now she can do all these things. Small gains for years of intensive therapy, but they are gains. They are permanent, and she didn’t need drugs or surgery to achieve them. For the two years before we started ABR, she made no progress at all. None.

So that’s my take on ABR. When you have a severely disabled kid, the medical industry offers little or no hope. Most treatments come with pain and risks, and might not work at all. So I decided to look outside the mainstream, find something that could be the next big thing, the paradigm shift necessary to spawn a breakthrough. And I believe ABR is it. I could be wrong, but I choose to believe. ABR gives me hope.

The Placebo Effect

May 7, 2010

The placebo effect is real; it’s why the control group in a scientific study gets sugar pills.  The effect of a drug is not measured by how much it improves a condition, it’s how much more it improves a condition than a sugar pill does.  Chloe and I try to maximize this effect whenever she takes medication, especially because all her meds go through her feeding tube, and she could “take” them without even realizing it.  So every time she takes medicine, we tell it what to do.  “Okay, trileptol,” I say, and she laughs, “you do your job and make sure Chloe’s brain behaves.”  I figure it’s good for her to know what she’s taking and what it’s supposed to do.   And hopefully, if she’s thinking about these things, we can maximize the placebo effect.

5 things doctors won’t tell you about your special needs child

May 1, 2010

  1. Doctors and therapists are experts in their fields, not in your child. Your neurologist is an expert in brains, and your occupational therapist is an expert in fine motor skills.  Sometimes, they don’t know much about your kid’s condition in general, and on top of that, most of their training centers around typical brains, fine motor skills, etc.  They have important insights into one specific part of your child, but that’s it.  In some rare cases, there are doctors or therapists who specialize in one condition, like Janice Brunstrom, who knows a heck of a lot about CP.  But good luck finding one of these gems, and getting your insurance to pay!
  2. Therapies are like religions, and you should be a pantheist. Therapists, especially those who advocate an intensive, “outside the box” approach, will often expect you to follow their advice 24/7.  But no therapist is an expert on your kid (see number 1), and often, their advice is based on their own opinions and theories, not hard scientific evidence.  You might try one of these for a while, but if you don’t think it’s working, move on.  You don’t need a therapy guru; sometimes the best plan is to take the best pieces from a lot of different therapies and leave the rest.
  3. Equipment won’t solve your problems unless you have the support you need to choose and use it correctly. Do you have an expensive communication device or activity chair in your closet?  How about a wheelchair that doesn’t support your child correctly, but you use it because Medicaid won’t pay for a new one for two more years?  Join the club.  The most important thing about a piece of equipment is the support and advice you get with it.  Make sure your providers and therapists know their stuff before you waste your money.   If they don’t, find people who do.
  4. Everything has risks and benefits, and every choice has a downside. Everything you do for your child, whether it’s getting a baclofen pump or choosing an inclusive public school setting over a private therapy school, will deny your child something, but it will also give her opportunities she wouldn’t otherwise have.  It’s not about finding the perfect solution, it’s about weighing the wins against the losses.
  5. “Normal” is not the right goal for you child, or any child for that matter. Are you sacrificing therapy time with the AC device because oral speaking seems more “normal”?  Are you wearing out yourself and your child with potty training because you hate the thought of a seven year old in diapers?  You need to accept that the rules are different for your child.  As painful and problematic as it may seem now, some goals are not worth the effort.  Concentrate on what your child can accomplish, and find ways to make his life happier and safer.  Forget about “normal.”  It’s overrated.

The Mysteries of Cerebral Palsy

April 29, 2010

I got a text from Chloe’s aide today:  “B says it’s the foam.”  Translation, Chloe’s school PT thinks that the foam inside her ankle-foot orthotics is causing the red marks on her feet.  Thing is, the foam was put there two days ago by the orthotist, in an attempt to stop the red marks.  This is not exactly a surprise.  When it comes to the details of brain injuries, no one seems to know what they’re doing.  When Chloe started taking anti-seizure medication last year and started having twitches in her hand, one neurologist told us to decrease her dosage, while another one told us to increase it.  Everything about cerebral palsy, from the head to the toes (quite literally) seems to fall into the category of medical mystery.

Sometimes I wonder if this is because people are looking at things the wrong way.  The best therapy we’ve tried, ABR, is based on theories that completely contradict the traditional views about cerebral palsy and biomechanics.  Sometimes I wonder if everyone else–the neurologists, the physical therapists, the orthopedists–are operating under false assumptions, practicing their trade in the medical equivalent of Ptolemy’s universe, where the sun revolves around the earth, and no amount of studies and theorizing can do any good.  Does that mean that ABR is Copernicus?  I hope so, but, without any solid scientific data on this therapy, there’s no way to be sure.

%d bloggers like this: