Peter's formula and diet

This is Peter's diet now that he is off TPN.  This post is in response to Kelly's question, but if it might be helpful to anyone else, please feel free to read as well.

Peter is on unflavored Pediasure Peptide 1.0.  He takes 300 mL by G-tube at night, and to that we add 67 grams of Duocal and 15 grams of Beneprotein.  Throughout the day, Peter eats the following by mouth:
400 grams plain Cabot Greek Yogurt (it has 22 grams of fat per cup)
180 to 200 grams of pureed fruit
180 grams of pureed meat
90 to 100 grams of pureed vegetable with about 5 grams unsalted butter
630 ml of Lactaid milk
60 to 240 ml of water
We add 10 grams of Duocal to his daytime food twice a day
About 1 Tbsp of Barleans Omega Swirl fish oil (He just started that a month ago, now that he is off IV Omegaven.  So far, it is the only enteral fish oil that doesn’t make him smell like fish.  We use the Key Lime flavored one.)
He will take additional foods on some days, like an ounce of fresh fruit, or an ounce of cookies, but that food is more like a “bonus” to his regular intake.

We have found that finding foods low enough in sodium is a huge challenge.  Commercial jarred baby food is generally pretty low in sodium.  We have been buying jars of baby food for Peter for years, even though he is seven.   The Duocal and Beneprotein have no sodium, so they add more calories and protein to Peter’s formula without added sodium or fluid, both of which aggravate his ascites.

Although Peter can chew many foods well, he is slow with the process, and by the time he has taken just a few bites, he says he is full.  We have basically been tricking his mind/body by feeding him his pureed food quick enough that it all gets in him before he feels full.  For example, for dinner, he will have two jars of pureed meat (120 ounces) within 3 to 5 minutes.  We set the timer for 10 minutes and he is free to go play then.  After the timer rings, he comes back to finish the rest of his dinner, which is a third jar of pureed meat and 90 grams of pureed vegetable.  Then he is done his meal.  His lunch and breakfast are done in the same manner, but with the Cabot yogurt and pureed fruit. 

One of us usually feeds Peter, as when he feeds himself, he goes so slow that his body tells him he is full before he has gotten very far.  That may sound very drastic, but in our case the need to get Peter off TPN to preserve the liver far outweighed the need for him to be able to feed himself independently.  (He already has possible cirrhosis, definite fibrosis.)  He holds and drinks his own milk, although he needs constant encouragement to drink it three times a day.  Any snacks he feeds himself.  As we move further along, I expect he will eventually take over his own feedings and even move away from purees.  We are attempting some of that now that we have more free time without the TPN and ostomy issues.

Of note, it took us several years to work up to this amount of feeds with Peter.  He literally started with 5 ml of milk once a day at about age 1.  There were many times over several years that we would push Peter too hard with enteral feeds and he would vomit.  Then we would have to back down from the amount of feeds we had gotten up to and try a more gradual approach to the new feeding goal.  At this point, we seem to be at a good point with Peter’s caloric enteral intake, where he is slowly gaining some weight, but not feeling so full he is nauseated.

Lastly, Peter has most of his intestine.  It has scarring and a unique pathway, but it is mostly all there.  From what I understand about short-gut, having enough bowel length is a very big factor in getting off TPN/IV fluids.

Riding on the scooter now

This summer, Peter has made many strides physically.  He says having the ostomy bag gone has made it more comfortable to run.  I also wonder if being off TPN has made him generally feel better.  Just a few months ago, Peter had very little interest in riding a scooter even one time down the driveway.  He would go ever so slowly and complain the whole way.  Now he is able to ride the scooter halfway around the block and back, actually enjoying himself and going at enough speed to glide part of the way.  Go Peter!