Deb Robins
Forum Replies Created
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Logistically, blood tests or rather an inability to collect blood from someone with advanced MD, become increasingly frustrating in my social media groups and became interested to consult a number of NMD adults to find that my son and peers fitted the rule rather than the exception. Speaking to pathology experts and patients for whom even ultrasound had failed, I was made aware that portacaths could be a solution without too much trouble in advanced DMD. I decided to advocate for routine ultrasound assisted blood collection and succeeded in obtaining some systemic assurances with the caveat that we will always need to advocate as patients. Thus my latest tip sheet: https://create.piktochart.com/output/57979559-blood-collection-strategies-for-md
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These strategies all resonate with strategies my son used throughout his 20’s living with Duchenne MD. He quite wisely has a PEG now at 34yrs, not to stop eating but to put his body under less pressure to obtain nutrients, risk aspiration and keep bowels regular. He still eats small amounts for some meals or to taste food for enjoyment.
Videofluroscopy testing does help personalize treatment, for instance, on analysis it was found that puree was actually worse for Doug and he did better with small pieces washed down with fluids. worked better for a time.
There is not a lot of understanding about the major cause of spillage of food particles from the throat pockets and the high risk of penetration even in adolescence, so I put together this tip sheet some years ago from expert advice.
https://create.piktochart.com/output/8023004-dmd-swallowing-food
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Good to hear. There is a wide spectrum of severity and rates of progression within the NMD group of conditions. Respiratory watershed moments are certainly unpredictable but because we network so well nowadays online, they can be anticipated and we can prepare to some extent. Here are those power failure and ventilator failure strategies I mentioned.
Portable Ventilator Precautions