Hello my fellow Pompe peeps!! I have a question... and I am interested in others thoughts and knowledge. So, Jesses 7, juvenile pompe. He has always been inattentive. Ive questioned it, school has addressed it, family has noticed it. He has had a full evaluation at school which resulted in average scores. We just did the Vanderbilt Assessment survey, which concluded ADD tendencies. So, we saw the primary dr this am to discuss options. The dr said that ADD is usually combined with a learning disability, and for Jesse that has currently been ruled out. So he recommended things to work on for improving attentiveness like meditation, exercise, decreased screen time. His dr also mentioned proper diet...fruit, veggies, protein, carbs (whole grain) to nourish the body & brain. Well..a light bulb began to flicker, and I addressed that hes on a very low carb diet, though very hard to follow, because with pompe they dont produce the proper functioning enzyme to break down the carbs so it turns into storage resulting in muscle damage. So, if carbs is needed for the body as an energy resource, & for proper brain functioning, and the body cannot break it down, so it becomes storage,... is there a link between inattentiveness and Pompe in patients because the body cannot break down the carbs it needs?
Posted on: Fri, 04 Apr 2014 15:06:27 +0000
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