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I’ve been finding more and more online resources for families of kids with Short Bowel Syndrome. In some of the reading I’ve done, I’ve learned that many parents have found their child’s mood/irritability to be directly related to their hydration status. Apparently, when kids with SBS drink water, it pulls even more fluids from their body, and they require an oral rehydration solution like Pedialyte® to stay hydrated.
We’ve been noticing a lot more irritability with Jenna lately, coupled with low frustration tolerance (hers and ours). We’ve explained it away with the stage she’s at (can you say “terrible 2s?”) as well as perhaps the allergy meds she recently started taking. Now, I’m beginning to wonder about hydration. Jenna weirdly alternates between drinking a LOT of water (like 8-10 oz. in a sitting) to hardly any throughout the day. Previously, I just assumed she would request and drink what her body needs. Then I found the above information, coupled with this from the Oley Foundation:
Patients with short bowel syndrome (SBS) lose more fluid from their bowels each day than they are drinking. Fluid losses should be replaced by drinking oral rehydration solutions. Such solutions were designed knowing that when the intestine absorbs salt, it absorbs sugar, and vice versa. When either salt or sugar is absorbed, water is absorbed as well. When the concentration of salt in a solution taken by mouth is too low (lower than the concentration in blood, for example), the intestine secretes salt in order to bring the concentration of the ingested solution up to that of blood. That results in the secretion of salt and water. Therefore, drinking water may be worse than drinking nothing at all, as it may worsen dehydration. Similarly drinking fluids with high sugar, but no salt, like soda and juice can actually make the patient more dehydrated. Ideally the amount of salt in the solution should be at least 90meg/liter. Solutions such as the World Health Organization rehydration solution, CeraLyte®, or Pedialyte® (with an extra teaspoon of salt added per liter) can be used.
On the flip side, I’ve done some reading on the dangers of over-administering Pedialyte®-type solutions because it can seriously disrupt body chemistry (more specifically, our bodies require a delicate balance of sodium and potassium for proper heart functioning). This information was geared toward “typically functioning” kids, so I don’t know what the scoop is for kids with SBS. How do you know what their bodies need without performing constant bloodwork??
We’re adding these questions to the list of questions we want to ask our doctors in Boston when we go this week. In the meantime, if you have a child who requires oral rehydration solution, here’s a recipe from the World Health Organization that you can make at home with simple ingredients instead of paying the high price for Pedialyte® at the store:
World Health Organization Reduced Osmolarity Oral Rehydration Solution Home Recipe:
Sodium chloride (table salt) 3/8 teaspoon (1/4 tsp + 1/8 tsp)
Potassium chloride (Morton Salt Substitute®) 1/4 teaspoon
Sodium bicarbonate (baking soda) 1/2 teaspoon
Sucrose (table sugar) 2 T + 2 tsp
Tap water add to make one liter
Directions: To the one liter container, add about 1/2 the needed water. Add the dry ingredients, stir well, and add the remaining water to make a final volume of one liter.
Add sugarfree flavoring of choice (like sugar free KoolAid® or Crystal Light®) if desired. Best when chilled in refrigerator. Sip as directed. Discard after 24 hours
The above formula provides approximately: 27 grams of sucrose, 70 mEq per liter of sodium, 20 mEq per liter of potassium and 30 mEq per liter of bicarbonate. The final osmolarity is approximately 245 mOsm per liter.