The necessity to feed patients frequently (sometimes as often as every 45-90 minutes for infants and every 3-4 hours for older children and adults) can often lead to feeding challenges and food aversions in GSD1b patients. A very restrictive diet, side effects from feeding tubes, symptoms of low blood sugar, as well as other sensory and motor difficulties that come from missing hunger cues, can make for huge hurdles for patients and caregivers. Many children need feeding therapy to overcome these challenges and a common suggestion from professionals is to engage little eaters in the making and eating of food at every opportunity.
Brooks’ family has taken that to the next level and they share their successes with the rest of us through their TikTok content. When asked about the motivation for this, Brooks’ mom Hannah explains:
Brooks likes to cook and we’ve noticed that the more he is involved with his food prep, the more he eats. It’s helped expand his food repertoire and gives him a a sense of control over one aspect of what he needs to put into his body, since his tubie is 24/7 and not negotiable. It also helps our family and friends understand his diet and shows that it’s not as scary or restrictive as it may sound! And he genuinely enjoys being videoed- he’s got a big, fun personality, so it’s a fun way to display that.
A big thanks to Brooks and his family for sharing their GSD1b feeding and diet with the rest of us. Check out all of the Brooks Cooks content HERE.