Tuesday, December 1, 2015

How To Fail a "Sweat Test"

 I never had a sweat test done for any of my CF kids. Maelee had blood work done to determine her CF diagnosis and the other two were found through amniocentesis. I did not feel a "sweat test" was necessary since DNA seems to me to be more telling than sweat anyway. I don't even remember it even being suggested until Ruby. I got phone calls from my pediatrician's office about it enough times that I further investigated my kids need for the test. It turns out that many of the new exciting CF meds (gene thereapy, etc) require a sweat test score. 

The sweat of a person with CF contains a crazy high salt level so a sweat test is the typical way a person is verified with a CF diagnosis.

So since I want my kids to be able to access all the new exciting CF meds when they are old enough to take them I got my two babies into the lab today to get the test done. The only lab is at the hospital 20 miles from our house at the same hospital we were already going to today for a CF clinic visit.

My amazing Mom was able to come with me to this appointment since it was going to be a double whammy of a 2 hour clinic visit and then the mystery of the "sweat test" scheduled after our clinic visit. Poor Orson was a nervous wreck waiting for this test to happen.

On the way to the hospital he began his usual nervous ritual of needing to urgently use the bathroom and having a very emotional panic attack in the backseat. So we drive through terrible traffic with a freaking out 4 year old in the back seat. So I am white knuckling the steering wheel - already a super nervous freeway driver - and trying to distract him by talking about the airport we were passing and where he would go on a plane if he could pick, and driving by the zoo and asking which animal he would take home if he could, etc.

We arrive and let Orson and Grandma jump out to get him to the bathroom and when I get down from the 3rd story of the parking garage with the stroller and all our gear he sweetly tells me, "it turns out it was only pee Mom."

Then we get through our clinic visit which lasted about 2 hours. Orson needed to use the bathroom again a couple of times during those 2 hours. We then re-check in to the lab downstairs to get our sweat test done. Osron pees again right before he starts his test. We have never experienced this test before so had little idea of what to expect.

We walk in and find a variety of interesting machines and medical equipment laid out on the table and counters in the room. Then they hooked Orson and the baby up to the "charge" of electricity that you see in the picture that will encourage their sweat glands to sweat. All during this process Orson was again panicked and kept screaming at the technicians questions like "are you going to hurt me with needles!?!" "What are you doing with those scissors? Are you going to cut my arm?!?"

The technician explained that it would feel similar to the sensation of your foot falling asleep. Orson disagreed. He sat there in a panicked frenzy as the machine "itched him" and "hurt him." Then after each arm was "charged" for 5 minutes each they wrapped a circular sweat collecting paper up with lots of plastic and a chemical warmer. They provided blankets for us to wrap the kids in (thank heavens my Mom was able to come so we could do both kids at the same time!!!!!) and they needed to sit with their arms wrapped up in tight plastic wrap and chemical warmers for 30 minutes to collect the sweat on the circular sweat collecting paper.

Neither child was thrilled to be wrapped and warmed in this way but they got through it. Unfortunately poor Orson did not sweat. He had peed out all of his fluids and we had not replaced them during the morning. When he heard the lady say he would have to do it again he was devastated. He turned to me and asked, "Mom the test didn't work, do I still get my prize?" 

YES SON! You totally get your prize! He was a mess all morning about the test and then it turned out he had reason to be. The great news is, he got a fun prize. And the even better news is all the kids got to hear his glory story and see the pictures we took. We are all very proud of him and Ruby for being the pioneers of the sweat test industry for our family. Maelee will get her test done when Orson goes back in for a second time later in the month.

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