A Weighty Problem

Action 4 Ashton > Duchenne Life > Medical Care > A Weighty Problem

They say that the scale does not lie; however, these numbers can not possibly be accurate.

08/20 199.7 fixed ceiling lift with scale
09/03 185.41 small platform scale
09/10 167 smaller platform scale
11/13 202 Maxi Move with scale

I don’t know about you but every time I am called back for my medical appointment the first stop is a step on the scale. This is so important that many of the clinics I have gone to has a scale in each room. The weight of children is even monitored more closely. The dosage of many medications is based upon the weight of the patient. And if you happen to need any complex rehab technology equipment your height and weight is necessary for appropriate sizing.

It still feels somewhat awkward walking past the scale in the hallway taking my now 13 year old son to see his Pediatrican and knowing they have no way to measure his height and weight since he has become non-ambulatory with his progressive muscular dystrophy, Duchenne. It was not such a major concern at first because he was enrolled in a clinical trial so every four weeks his weight was taken in a hospital bed with scale and about every 8-12 weeks his height was calculated by a physical therapist based upon the length of his ulna bone.

That trial was abruptly cancelled by Pfizer so Ashton had his final height and weight recorded for that in September 2018. I had been transferring his regular neuromuscular care to the Stead Family Children’s Hospital in Iowa City, Iowa since we were there every four weeks anyway and they were a Certified Duchenne Care Center by Parent Project Muscular Dystrophy. Wisconsin did not have one.

He was being seen by neurology, cardiology and pulmonology every six months and was being referred to endocrinology. The clinic there used a Maxi Move to get an accurate weight for patients who could not stand on a scale. His weight had become more of a major concern since becoming nonambulatory as he was visibly rapidly gaining weight and because his corticosteroid dosage is based upon weight. His last time seen by any specialty there was October 2018.

Since the end of the trial we have transferred his regular neuromuscular care back to Wisconsin. Surprisingly, both the clinics at the main hospital campus in Milwaukee and at the smaller hospital location in the Fox Valley for the Children’s Hospital of Wisconsin do not have a way to weigh nonambulartory children that are too heavy to be manually lifted.

It had been a while since Ashton had his weight checked so it was a spur of the moment thing when his Physical Therapist was using a ceiling lift to get him on and off an adapted tricycle. I asked if the lift had and built in scale which it did so I asked if she could check his weight real quick. I was a bit alarmed hearing his weight was just three ounces under two hundred pounds. He had been seeming a bit more difficult for me to move and dress and I did need to purchase the next size clothing but. . . And now I needed to get to the bottom of this, find an explanation to these varying readings and convince the ATP how much Ashton actually weighed to avoid getting stuck with yet another new piece of equipment (one power wheelchair and one stander) that quickly becomes too small and can not be grown to the appropriate size.

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