More updates

The last post was actually from Feb 19, even though dated the same as today, so these are new updates.  We restarted formula last night, just 200 ml at 20 ml per hour.  Peter will just do plain formula, no flavoring, as that will lower the osmolality of the formula and may help decrease the likelihood of diarrhea if it was related to the flavored formula he had been on.  I had read that the formula (Pediasure Peptide 1.0) was on the lower side in osmolality compared to other formulas, but didn't realize that there is a considerable difference in it when choosing flavored formula versus plain.  Just like in the "real world," there are added sugars and colorings in medical-grade formulas.  Now the obvious question is, "Why?!"  With the substantial number of people on medical-grade, prescription-only formulas, couldn't someone do a better job with the composition of them?  I've tasted his strawberry formula and it is too sweet.  It hides the flavor of the plain formula well, but I don't know that the sweetness is as necessary as the strawberry flavor.  Then there is the bright pink color that is created with red food dye FD&C #3.  For some reason plain and vanilla don't need a fancy color, but strawberry does?  There are other formulas on the market, but "plain" is a difficult flavor with all of them, and some of the other formulas we've tried are too thick, come only in vanilla (a flavor that makes him vomit), or are just don't suit his needs.  Maybe some entrepreneur out there will come up with better formula options, like color-free, or low-sugar not artificial.  Fortunately, Peter has a G-tube, so we can give the plain formula to him now overnight and he won't have to taste it.  Hopefully we'll have better luck with this lesser osmolality.

We have found that sodium is becoming a problem now that Peter wants to eat.  Peter has always had problems in retaining sodium and then developing ascites in his belly from accompanying fluid retention.  The best measure to prevent this is just to keep his sodium intake low.  I mistakenly thought that we had some wiggle room while off formula and let him have Cheez-Its, goldfish, pretzels, etc, all loaded with salt.  It only took a week of that too see his belly begin to get big.  Fortunately he is responding well with extra water and taking away the salty foods, and he is losing the ascites.  Unfortunately, he is only six and can't understand why I would buy him these snacks only to take them away.  He actually said that to me in almost those exact words, crying profusely as he said it.  It is quite a juggle with him to work on good foods when all these years we have tried to get him to eat anything, anything, just for the practice of chewing and swallowing.  If he ate 12 goldfish in a day that was impressive.  Now he wants 25 goldfish, and 15 animal cookies, and 20 Cheez-Its, all at one sitting, repeated three times a day.  He is eating three good meals a day, with things like plain yogurt and meat, veggie, and fruit purees, but it is these snack foods which give him the practice of feeding himself and which he absolutely craves.  We are starting to leave out little pieces of kiwi and apple for him to practice with new snack foods, and I'm sure he'll make the transition over to better foods, but it is hard to see him so frustrated trying to understand the concept of moderation now after trying so hard to get him to eat at all.  We went on an outing to the grocery store this past weekend to pick up new foods to try.  That is when we picked up the snack foods listed above, but he also picked up grapefruit and a turnip that he said he MUST try.  "I don't know what a red grapefruit or a turnip tastes like, Mom.  I HAVE to know what they taste like.  I've never tried them before."  I guess we'll go back to the store again this weekend and find some low-sodium things to eat.  He picked out four kinds of cereal to eat when we were there this weekend, but they are not holding his interest like the animal cookies and the salty foods.  He loves bold flavors, but bold flavors seems to have high sodium.  Other short-bowel patients have shared that they crave salty, bold flavors, so Peter's cravings may be more physiologic than psychologic.  I think we are going to have to get pretty creative in finding ways to give strong flavor with low sodium.