Multidisciplinary Approach: Intestinal Failure Innovations
Educational content from recorded physician discussions — not medical advice. Talk to your (or your child's) care team about your situation.
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What the experts said
The Cincinnati intestinal failure program was started in 1984.
Almost 30% of patients who left the NICU without receiving rotavirus vaccinations were readmitted with rotavirus infection.
By monitoring patients and administering rotavirus vaccination in the hospital with isolation protocols, rotavirus readmissions were reduced to almost zero.
Kids with 50% of bowel remaining will do well, and even those with as low as 20-10% of estimated bowel length can do significantly well; some might be able to get off TPN.
It doesn't matter whether the ileocecal valve is present; what matters is whether they have a colon.
At Cincinnati, the infection rate was 12 per 1000 catheter days in the 3 years prior to team implementation, and as of last year it was 2 per 1000, approaching less than 1 per 1000 this year.
IR colleagues state that PICC lines should be much more damaging to vessels because there's far more contact with the vessel, but empirically infants appear to do better with PICC lines when in the hospital.
Subclavian approach for central lines is probably inferior to a jugular approach for risk of stenosis.
Within the last 3 years at Pittsburgh, no child has been transplanted because of limitations of vascular access.
Ethanol locks use 70% ethanol, though Pittsburgh now cuts it down to 35% ethanol.
Ethanol locks are used as a dwell when the patient has a TPN window, requiring the patient to be on cycled TPN.
Better results are seen with ethanol locks when using a 6.6 catheter than when using a smaller catheter; smaller PICC lines tend to occlude when using ethanol.
In the UK, there is predominant use of taurolidine locks to prevent line infections, with a planned multi-center study to prove efficacy.
Line care is the crucial thing; if a child is getting recurrent line infections, revisiting line care is critically important before proceeding to any kind of locks.
Soy-based lipids are laced with phytosterols which are cleared very poorly, share the cholesterol heterodimer transporter in the hepatocyte (which is down-regulated by endotoxemia), and reduce expression of the FXR nuclear receptor instrumental in maintaining bile acid homeostasis.
Patients at risk for long-term TPN have a much lower risk of cholestasis if lipid intake is limited to 1 g per kilo per day.
If patients develop cholestasis on 1 g/kg/day lipids, the dose may be reduced to 1 g per kilo per day every other day, recognizing they may become essential fatty acid deficient.
Using lipid restriction, the cholestasis rate has been reduced to less than 5% of patients, and it is extraordinarily rare to see a patient cholestatic for more than a week or two.
Omegaven (fish oil-based lipid) may have the theoretical advantage of being anti-inflammatory.
Some patients who don't respond to lipid restriction can achieve benefit from fish oil-based lipid.
With lipid restriction protocols, cholestasis does not come out of the Cincinnati NICU.
The standard metrics for essential fatty acid deficiency are based on malnourished children not on TPN, so high mead acid to tetraene ratios may not necessarily apply the same way to patients supplemented with abnormal mixes of essential fatty acids.
Symptomatic essential fatty acid deficiency is not seen in Seattle's practice.
The higher the glucose infusion rate, the less efficient glucose is used as a caloric source, and the more it's pushed towards fatty acid and fat deposition.
The goal of an intestinal failure patient on chronic TPN is not maintaining the 50th percentile for growth or a normal growth pattern; it's unclear what the growth curve of a kid with intestinal failure should look like.
The most important thing is that patients continue to advance along a growth curve.
By restricting lipids and being limited with glucose, growth can sometimes be affected, but for the most part kids can be made to grow, though they are a smaller population than standard growth charts portray.
In the UK, small lipids (SMOFlipid) are usually accessible, so symptomatic essential fatty acid deficiency is not usually seen.
Measuring essential fatty acid profiles is much more difficult in the UK than in the US because of NHS restrictions.
Kids with spontaneous intestinal perforation (no functional bowel removed) versus resections less than 10% up to 50% versus greater than 50% of estimated bowel length are still on parenteral nutrition at Cincinnati for 2-3 months.
Feed absorption is the best measure of bowel function; the amount of feed the child will tolerate and the ability to progress that feed.
The ability to manage fluid balance appropriately to wean the child from TPN or give nights off TPN while advancing enteral feeds can be used as a marker of function.
The ability to wean down TPN while maintaining good growth is the most important functional measure.
Kids are now growing with linear growth above the 50th percentile consistently for those with genetic potential; excessively fat kids with poor linear growth are not seen.
Liver disease and recurrent infection were crucial to poor growth; now much better growth is seen.
In the majority of cases, upper GI will pick up mechanical problems, but the absence of findings does not mean there's not an issue, particularly with low-down anastomotic strictures.
Sometimes the anastomosis is not necessarily strictured but kinked or not quite grown in alignment and slightly twisted; these functional anastomotic problems resolve with revision.
Endoscopy is valuable for actually visualizing an anastomosis to ascertain the diameter.
Motility abnormalities seen in short bowel syndrome are not well described in the literature or in practice; manometric assessment is less and less requested in children with dilated bowel.
The best functional study of the ability to feed a child is sometimes a post-gastric tube dripping in, because the rate-limiting step in some kids is foregut dysmotility.
Decompressing the stomach at the time of distal feeding without worrying about gastric residuals has demonstrated the ability to feed the distal bowel; there's probably a feedback mechanism that improves foregut emptying over time.
Dan Teitelbaum at University of Michigan showed that when each surgeon or gastroenterologist managed 2-3 patients individually, 1-year mortality was 30-40%, but after developing a team approach, mortality dropped to about 5% per year.
The PIFCON study reported line infection rates of well over 8 infections per 1000 catheter days.
The complication-free survival of a PICC line is only about half that of a Broviac, based on IR literature including adults and children.
Some centers have shown very good results utilizing ethanol locks 3 times weekly (Monday, Wednesday, Friday).
From Clayton's work in the UK 25 years ago, the strongest association with irreversible liver disease is with administration of high doses of soy-based lipid preparations.
Neonatologists often use high lipids (2-3 g/kg/day) because they find it easier to manage glucose control instead of giving adequate energy as glucose, avoiding frequent insulin use.