I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.
Our son is currently undiagnosed. He has a suspected metabolic condition, but his doctors haven’t been able to confirm that theory, much less figure out which one specifically. He needs more food than he should need to grow and gain weight and we aren’t sure why. He also has low muscle tone, which causes him to tire easily. The combination of the fatigue and needing an abnormally large number of calories has left him on a feeding tube for a large portion of his life so far.
The low muscle tone, or hypotonia, means he’s significantly behind on gross motor skills. We’re still working with him every day to help him learn to walk and crawl. With weekly therapy, he’s making about a month’s worth of progress every month. He’s not catching up but he’s also not falling behind. It took a long time to get to the point where he could tolerate exercising for the entire 45 minute appointment, and we’re so proud of him!
Overall, he’s making good progress and I’m proud of how far he’s come. We’re still hoping they’ll figure out why he needs so many extra calories and why he fatigues so easily. Anyway, now you know!
Here’s to your son, meeting that 45 minutes of exercise. I remember the first time my son managed to finish a therapy session without tiring. The emotions were overwhelming, then when he became the kid who never stopped, well I was blown away.
I hope that the doctors can give you answers soon, but I also know that it’s an umbrella. A diagnosis gives you a name, but it doesn’t really change anything that’s going on. It might give you a path to follow which will help your son, but in the end he’s still the same little boy.
Folks always ask me about my son’s diagnosis. There is a part that is ‘unknown’. His MRI’s show an abnormal abnoramality, which the doctors have no idea what that is. People always ask me if it drives me crazy to not know. After 16 years, no. It does not. In the grand scheme of things, he’ll still be him and I’ll still be me and we’ll just keep on like we do.
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Thank you for the kind words! I really was overtaken with joy when he could work for the full therapy appointment. It gave me hope we can finally reach some of these gross motor milestones.
I agree that the name of whatever he has is of limited use. Depending on what comes back in his current round of testing, we might not be able to do anything for him even if we know what’s wrong. We’re mostly going through it all because there’s a chance he does have a treatable condition and we need to try just incase.
I’m so happy to hear you and your son are doing well despite his medical concerns. I hope we get there too, sooner rather than later. The therapists keep telling me that once he learns to walk he’ll have essentially caught up to his peers. We just have to keep working to help him get there. Once he can walk it won’t feel so much like he’s missing out.
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