Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.”  I was kind of excited to go, as it sounded like quality PD right up my alley.  “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.)  And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

This is in no way as easy as it sounds.  Children are programmed to wait.  They want the “right” answer.  They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems.  I need to make sure their knowledge of math is broad.  I need to tap off the skills their classroom teachers have taught.  I need to set firm boundaries and standards for not giving up.  Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony.  And other days it sounds a bit like an early childhood music class.  But I try, and try again, and we make progress.  Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week.  And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus?  Nope.

Flu?  Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

And so it continued, and still continues.  We have met many nice, well intention-ed doctors and residents.  And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests.  Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial.  And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history.  It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more.  There is lab work, sonograms, MRI reports.  I actively cataloged the whole thing by date.  And I brought it.  And I offered it to the doctors.

And then I took it home.  No one even laughed at the cartoon on the cover.  I’m not sure it was ever opened.

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.”  So when a tough case hits them – they only do what they would normally do.  And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night.  We spoke about the AVM on her hand.  We continued through the MRIs that exposed her to extreme amounts of gadolinium.  We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches.  We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.”  We remembered another MRI to make sure the brain was clear.  We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache.  Raised, not changed.  We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.”  We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor.  We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy.  We talked about the surgery and the hospitalization that followed with GI issues in February.  We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy.  Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do.  We spoke about the ENT and his determination that there was inflammation in the nose.  We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests.  One at a time.  And they watch and wait.  And we go for ultrasound and CT scan.  And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex.  No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs  being totally our of her system.

They come in and tap her belly.  It still hurts in the same spots.  But that’s not what they want.  They did what they know.  Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people.  It’s not always easy.

But she’s young.  And she’s bright.  And she’s frightened.  And she’s worth it.