Fluids

From ShortGut - Wiki

• Some kids need extra IV fluids, which are called replacement fluids or lactaided ringers (LR). You have have extra fluid on hand at home (order with your TPN) and infuse it as needed.

• Pedialyte vs Oral Rehydration Solution (ORS) vs water -- for a good account, see: http://www.oley.org/medicalconcerns.html -- if you don't include sugar and salt with water (or with electrolyte solution) then you can end up sucking water out of the intestine, which is not good. Recipe: 1 liter water, 3/4 tsp. table salt, 1/2 tsp. baking soda, 1 cup orange juice, and 4 tbs. table sugar. Flavoring may be added by using sugar-free Kool-aid® or Crystal Light®.
• The World Health Organization formula (http://www.oley.org/lifeline/oral_rehydration_recipe.html) is available in prepackaged form from Jianas Brothers Packaging Co. (2533 Southwest Blvd., Kansas City, MO 64108; 816-421-2880).
  • For the tiny amounts that MaxMunakata drinks, we used make-your-own WHO formula from above link (http://www.oley.org/lifeline/oral_rehydration_recipe.html). Apparently formula is still recommended over these electrolyte solutions for infants.
  • A version of the WHO formula used by Omaha's Pediatric Intestinal Rehab Program: mix 750ml of water, 250 orange juice, 1/4 tsp salt and 1/2 tsp of baking soda. Keep in frig and discard after 24 hrs.
• Ceralyte is one ORS option available commercially. It contains a macromolecule (rice ingredient) that reduces dumping. It can be mixed with Crystal Lite to improve the flavor.
• Alternatively, here is a rice-based ORS recipe from the Clinician's Guide to Short Bowel Syndrome ( Clinicianguidesbs.pdf):

1/2 cup dry, precooked baby rice cereal
2 cups water
1/2 teaspoon salt

Combine ingredients and mix until well dissolved and smooth. 
Refrigerate. Solution should be thick, but pourable and drinkable.

• And a personal recipe from the Short Bowel Syndrome yahoo group:

I may put one-fourth cup of rice (white rice, brown rice takes forever 
to become soft) and three or four cups of water. After it boils, turn 
the heat to low and just let it cook for another half an
hour or so. The water will become creamy and the rice very soft. It
is easy to master. If the water looks very thin, you can add more
rice at the beginning. Sometimes I do add tiny bit of salt in the
end.

• See also Excessive_hunger_and_thirst

• Breast milk (stimulates intestinal adaptation) vs. formula (allows better absorption)?

Recipes

• Breast milk: When MaxMunakata was 1.5 months old, I was told that he was unlikely to ever be able to drink my milk, and that I should stop pumping. But I ended up being able to nurse him 1-3 times/day, from when he was ~2 months until into his second year. He also receives a mix of half breast milk/half formula in his continuous g-tube feeds. It's hard to know exactly how much he absorbs from these, but he is able to stay within the limits on stoma output (50 cc/kg/day) and keep his electrolytes stable. It is obviously a very personal decision when/whether to stop pumping, particularly in the face of discouraging advice from doctors. But I am happy to provide encouragement for anyone who wants it.

Formulas

Patients with Short Gut are typically on elemental or semi-elemental formulas because they are more easily absorbed. Please add your comments about different formulas.

Infant Formula

Toddler Formula