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So after a *very* long day we have a dx for J-severe Gastroporesis. Explains a lot even though not only were DH and I shocked but the GI could not believe the findings either as we *all* were placing $ on Crohn's.


So now we get to find dense, yet high calorie, low in fat and fiber but still be healthy foods for J. He is to have a Carnation Instant Breakfast every day and eat when he is hungry, no more meals for J right now, and possibly ever. Yeah me :glare: This does explain why he always eats breakfast, and usually a *very* good breakfast and by dinner time we are literally begging him to eat *something*.


The meds used to treat the symptoms have more adverse reactions than they are worth. Minus Propulsid which was pulled off the market because people kept sharing meds and the Propulsid reacted with deathly effects when mixed with cardiac meds.


We do have a script for low-dose steriods as *everything* has improved with steriods. So we will try those for 4 months, shorter if things worsen of course, and see what happens. In 4 months if J has not shown he can gain, and keep, the weight on, we will be talking of ways to by-pass his stomach to get nutrition in him.


The GI doc asked us "um, where does he go to school again?" He :D when we told him he was at home. He does *not* want J in a traditional setting because in his words "he would be completely miserable". He needs to eat when he is hungry, even if that is every hour. Making a child attend school whom has Gastroporesis, when they eat breakfast at 630a then lunch at 11a but nothing after that is pure torture. He said some schools have acted like he was wanting the child to take a bomb into school when he sent in his requests for *medical* food!


Today we are resting and going to a field trip with our local homeschooling group then a homecoming parade after that. At least we have answers but it is annoying that there isn't a lot we can do to "fix" things for J.

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As much as the new rules are tough, I'm sure it is SUCH a relief to have a diagnosis and plan!


My son LOOOOVES the Genisoy chocolate protein shake mix, which is similar to Instant Breakfast. Did the doctor refer you to a nutritionist for some more ideas of what would work for your DS?

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