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Googling Symptoms and Tests for My Child Is Not Always a Good Idea

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“A worried mom does better research than the FBI.” I can tell you this feels very true. In this digital age, having the power to access endless information can be a blessing. There’s really no limit to the knowledge we seek if we set our minds to it, dedicate the time, and put in a little mental elbow grease.

I can also tell you it can be a curse. It all depends on how you utilize that power.

When my son, Roland, was hospitalized for failure to thrive at 4 months old (caused by severe hypotonia, we now know), my husband and I had to stay in the hospital with him for a week. In that week, countless vials of blood were taken from him — sometimes via scalp or feet veins because, it turns out, having hypotonia can make it difficult to stick a vein. Most of the time, doctors wouldn’t name what tests they had in mind. Occasionally, they would give my husband and me some indication of just what they were searching for if we pushed hard enough.

Can you guess what we did then?

Yep, we set to work like detectives. We were Roland experts putting together each symptomatic “clue” that fit into our puzzle. We desperately tried to piece together a diagnosis, a picture of what we thought his life might look like once we left the hospital. Hours upon hours of online research (because there’s also not much else to do in a hospital) left us exhausted, irritable and utterly terrified by the possibilities.

And this process repeated itself every time a possible diagnosis was on the table.

The thing about hypotonia is, over 600 (known) conditions can cause someone to have it. Often times, an exact cause is never found, leaving kids like Roland officially undiagnosed and medical experts scratching their heads.

In the course of that week, despite all of the tests ran from my son’s blood, we found nothing. Instead, we left the hospital with an NG tube and a gut-wrenching, heartbreaking idea of the hundreds of diseases and conditions that can cause hypotonia — too many of which could end our son’s life. It was a relief when some of those tests came back as negative. It felt like we had just navigated a mine field, stepping carefully here and there, anticipating an earth-shattering blow at every turn only to escape. We were left terrified (but wiser) on the other side.

We also left the hospital realizing Roland’s doctors had been trying to protect us. We should have known — it is very clear in hindsight — but at the time we couldn’t see past the shock, grief and the terror-driven need for answers.

They had seen this dance too many times before. They had seen this play out, probably on a daily basis, and they knew by giving us a name (or names), we were going to spend hours researching it, crying over it, worrying, and starting this same process over again the next day when another disease/condition was mentioned. They anticipated the nightmarish roller coaster ride that was to come with each new possibility, and they tried to shield us from it.

Almost three years later, I would love to tell you I don’t spend hours looking up stuff on the internet while we are waiting on test results. But that isn’t true. My son remains undiagnosed. Every now and then another possible diagnosis pops up, or it’s time to review the testing we have done, or a new symptom arises, and I feel myself being transported right back to that hospital fold-out couch, laptop on my lap, frantically searching and searching while my 4-month-old slept peacefully in his metal crib.

After three years, I have learned not to research in the time between test results, but sometimes I do it anyway. I’m only human — just a lovesick mother seeking answers for her son in a desperate attempt to lessen the blow of every potential threat. A strike-first strategy, if you will.

Honestly, it’s a strategy that has failed me every time. The only thing I have succeeded in doing is causing me and my family unwarranted heartbreak and stress. Listen to me when I say this: wait. Keep your mind occupied and your hands busy in that time in-between. Wait until you have a solid answer, a diagnosis or until the doctors tell you with 100 percent certainty what is going on.

And then strike.

Follow this journey at All Things Considered.

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Getty image by diego_cervo

Originally published: January 30, 2018
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