Health Care Is Broken For Our Kids, Too

A friend called yesterday to ask my advice about her 12 year old son who has a seizure disorder. I could hear the angst, not to mention the white knuckled, p.o.’d anger in her voice as she described what has been going on.

Tyler had his first seizure in elementary school, and any parent who’s ever witnessed one knows it tops the list of the scariest things out there. The only thing I can compare it to is an earthquake happening in the body. Just like an earthquake, you think it’s never going to end — and you’re terrified your child won’t survive it.

A pediatric neurologist was called in and put Tyler on Dilantin, a seizure drug that’s been around for a long time. It has some known side effects and a pretty good track record for effectiveness. He did well, and after awhile the seizures stopped altogether. Several months later the doctor weaned Tyler off Dilantin in the hope that he’d outgrown the problem.

A year later the seizures returned, though they were minor at first. Tyler was put on Depakote, a different medication with a different anti-seizure action. When the seizures continued, the dose was gradually increased, but no one (except Tyler’s mom) ever suggested putting him back on Dilantin, in spite of its past effectiveness.

A few weeks ago, while the family was on vacation in the mountains, Tyler had a whopper of a seizure. The ER doc at the local hospital called the neurologist, who told him to up the dose of Depakote to the highest possible level. Long story short, Tyler is still having seizures on this maximum dose and his mom is screaming bloody murder at doctors she’s completely lost confidence in. But no one is listening, and here’s why.

In our HMO world, where medical practice is dictated by the insurance companies, doctors tend to partner together in large groups to save on overhead and spread out the HUGE volume of bureaucratic paperwork.

Like any monopoly, these groups lose some of their connection to the patient and start to act like they’re manufacturing widgets instead of taking care of people. Doctors see patient after patient and barely have time to do a basic exam, much less connect in any real way. They’re not bad people. They’re not bad doctors. They just don’t see their job quite the same way as they used to.

So instead of taking a closer look at Tyler’s history, and figuring out the best treatment for THIS unique child, they follow whatever medication protocol is popular now and check the Depakote box. And just try to get approval for a second opinion out of the network, or, even harder, to choose an outside physician. You could fly to the moon in less time.

So I gave my friend as much inside information as I could about how the system works, taught her some buzz words, and hope for the best. But what I REALLY hope is that we get meaningful health care reform that loosens the vice-like grip the insurers have on all of us — patients, doctors, and parents — and that we can get back to doing the right thing and choosing the right medicine and making medical decisions for the right reasons.

No, I’m not naive. I know that economics and politics — not the healthcare needs of patients — will determine what our “new” system looks like. I’m worried that too many bumps will appear in the road and the detours won’t be pretty. But I’m also hopeful that when the dust settles we WILL do the right thing and end up with something that actually keeps people healthy instead of slapping on an ever expanding series of band-aids as they get sicker.

Because Tyler depends on it.

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Rachel Zahn, MD is a pediatrician turned health writer who had three kids during medical school and pediatric training—crazy, huh?

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