Lab Work Is No Fun for a Child With Pompe

My 4-year-old son, Cayden, had a routine checkup with his metabolic specialists during a recent Pompe clinic day. Although we always know what to expect during these visits, that’s both a blessing and a curse.

After Cayden sees the doctor and completes a physical therapy session, we then head down to the lab so his blood can be taken. He’s a smart boy, and he knows what’s about to happen the moment we walk through those doors. The labs the doctors order are routine for Pompe disease patients to complete every so often and include checks of creatine kinase (CK) levels, basic liver labs, and a urine test called HEX4, designed specifically for Pompe disease.

Someone with Pompe disease typically has elevated levels of all of those things, which is why routine lab work is necessary. If there’s a sudden spike in any of these labs between visits, the doctor may want to follow up with the patient to figure out why. It could be that they’ve not started enzyme replacement therapy yet, and it’s now time. Or it could be that they need a higher dose of the current enzyme replacement therapy they’re receiving.

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Thankfully, Cayden’s lab work has remained pretty stable over the past few years. However, I understand why it’s always necessary to check. We can’t see what’s going on inside someone’s body at a cellular level, although that would be amazing.

Despite the fact that he’s no stranger to getting lab work done, Cayden doesn’t enjoy it one bit. I really can’t blame him. I know just how uncomfortable it can be to get your blood drawn, and I’m an adult. I can’t imagine how scary and painful it must be for a child, especially my own child.

I always hold Cayden on my lap when he’s getting his blood drawn, in hopes that it may ease his fears. The moment he sees the needle come out, however, he instantly starts to panic and cry. It pulls on my heartstrings, but I just remind myself that it’s needed. I can’t let Cayden see my emotions, so I always hold it together for him. If he were to see me upset or crying, it’d make him feel even worse, which is the last thing I want.

We’ve yet to find a way to make lab work easier for him. I try talking him through it, bribing him, hugging him extra tight, and more. But nothing calms his fears. I hope that as he gets older, this task becomes easier for him. I’m sure one day it will, but today is just not that day, and that’s completely OK. His fears are valid, and I’ll always make sure he knows that.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.