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sanfilippo g-tube mom's advice to others considering the surgery: get an ultrasound first

11/21/2023

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Washington (state) Sanfilippo mom Taci has one important piece of advice for other Sanfilippo parents that are contemplating or about to go through with a G-tube surgery: Get an ultrasound of the body, before the surgery. It could prevent some major complications. 


​Had the team of doctors that performed her son Ryder’s G-tube surgery in 2022 performed such a pre-surgery ultrasound on Taci’s son Ryder, Taci explained to me, the doctors likely would have discovered that Ryder’s stomach had at some point separated from the stomach wall (or something along those lines), which in turn had created ideal conditions for an infection to have built up in that area of Ryder’s body. Taci noted that Sanfilippo children in particular are exceptionally prone to various infections and medical complications, so in hindsight perhaps a more thorough antibiotic regimen for Ryder prior to the surgery would have helped prevent some of the medical complications that ensued post-surgery. Taci is happy to report, however, that the G-tube surgery ultimately worked out great for her son. I’m fact, Ryder has transformed himself from a skrawny kid into a rather husky young man over the past year - largely as a result of being able to get more nutrients and calories into his brave and battle-tested body.
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    Mike Dobbyn,
    Sanfilippo dad

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