This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, September 2, 2017

Enteral and Parenteral Nutrition (Feeding by tube or IV)

For a number of reasons, there are some people who are not able to eat food at all or who have very limited numbers of safe foods (often fewer than 10), which are not enough to provide adequate nutrition or calories.  Food can be replaced by either a formula (which is either consumed orally or delivered through a feeding tube) or TPN, which is when nutrition and calories are delivered intravenously through a Central Venous Catheter (also know as a central line) which bypasses the GI tract altogether.  Formula is usually tried first while TPN is usually a treatment of last resort.  This is because while there can be complications of having a feeding tube, TPN is associated with serious risks and is hard to maintain.  It is used when there just aren't other options.  A patient may need TPN for just a short time, or it may be a lifelong need.

Some people need these options due to conditions they are born with, while for many others the need arises as a disease progresses or after some types of surgeries and treatments (such as surgical removal of part of the intestines).  When this occurs due to "mechanical" problems with the GI tract (such as Short Bowel Syndrome) there are many options for formula and some people are able to still use food as long as it is blenderized into a liquid and given through a feeding tube.  Loss of tolerance to all (or nearly all) food is not uncommon in people with allergy-related diseases such as EGIDs (Eosinophilic Gastrointestinal Diseases) or Mast Cell Diseases.  These people need to use a special kind of formula known as Elemental formula (also called "the elemental diet") which is a medical food substitute composed entirely of pre-digested, broken down nutrients so that the GI system does not need to process the formula.  These formulas contain only amino acids, which are the building blocks of protein, but contain no actual protein.  There is some confusion, even among specialists, that peptide-based formulas either are elemental or are appropriate substitutes for elemental formula which is generally NOT true.  Peptides are strings of amino acids rather than individual amino acids and can still be allergenic. This is done because it is believed in conventional medicine that all allergens are proteins, so it makes sense to remove all protein from the diet of someone who has a severe allergic disease (in these cases the protein is replaced with the amino acids themselves, which are the building blocks of protein, so the patient still receives adequate nutrition).  In reality many people with this level of food intolerance also react to oils and other triggers that are not proteins so may not even tolerate elemental formula.

Some resources to help you get started:

Help! G-tubes, J-tubes, TPN - Where do we begin?  From MitoAction
FAQs about TPN from The Children's Hospital of Pittsburgh
ASPEN (American Society for Enteral and Parenteral Nutrition)
Total Parenteral Nutrition (TPN) From G-Pact (Gastroparesis Patient Association)
Intravenous Feeding From the Merck Manual
Artificial Nutrition Support in Intestinal Failure: Principles and Practice of Parenteral Feeding
The Oley Foundation YouTube channel

The Oley Foundation is the primary support and advocacy group for people who use Enteral or Parenteral nutrition (tube feeding or TPN).  They have recently discontinued their toll-free numbers. Here are the new numbers to contact them:

To reach the Oley office:
Call (518) 262-5079

The office recently moved to a new location:

Oley Foundation Offices
Albany Medical Center, MC 28
99 Delaware Avenue
Delmar, NY 12054

To access the Equipment Supply Exchange Program:
Call (518) 262-2230   (Messages are typically responded to within two business days).
or visit

Options for formula:

The most commonly used elemental formulas for patients of all ages are Neocate, Jr and EleCare, Jr.  Both are relatively low in protein/amino acids and contain corn so other options may be necessary for some patients.  (EleCare also contains soy oil as does Neocate Infant).
Complete Amino Acid Mix (NOT a complete formula, but an important option for some)
Physicians' Elemental Diet (new corn-free option for elemental formula)
Organic formulas for tube feeding from Kate Farms (NOT elemental)
Complete product information sheets for Nutricia products
KetoCal is a ketogenic formula that can be used for patients needing a ketogenic diet for the management of epilepsy or other disorders.  There are also specialized formulas for patients with PKU, Maple Syrup Urine Disease (yes that's a real thing), and other inborn errors of metabolism.

Accessing and paying for specialized formulas:

Medical foods and insurance coverage (great place to start, lots of information and examples)
State insurance mandates for covering the cost of elemental formula
Nutricia Navigator is a free service from Nutricia to assist patients in getting insurance coverage
Insurance guidance from Abbott Nutrition (makers of EleCare) including their support program for help getting formula covered by insurance.
Site that sells reduced-price formulas for tube feeding
Formula can often be purchased on eBay or Amazon for a reduced price as well.

TPN information and resources:

Oley Foundation list of topics regarding TPN
Groshong Catheter Booklet
Recent research findings about prolonged use of central venous catheters (CVCs)
Smoflipid® Launched in the United States (an alternative source of fats for TPN)
Omegaven (a lipid for TPN made from fish oil with no soy) has been approved by the FDA

Risks and side effects associated with central lines and feeding tubes:

Aluminum Accumulation in the Bones of Patients on Long-term PN
Small Bowel Transplantation: Ask Dr. Thomas Fishbein

Infection and sepsis is a common complication for patients with in-dwelling lines (feeding tubes and TPN) and can be hard to treat (normal treatment is IV antibiotics).  A relatively new option is a protocol developed by an ICU doctor out of desperation at seeing dying patients.

Doctor Turns Up Possible Treatment For Deadly Sepsis (more on this here).
A cure for sepsis?

Nutritional deficiencies, especially fatty acid deficiency.
Nutritional deficiencies can occur and should be watched for (especially iron).  
The lipid (fat) used in most TPN in the US is made from soy and many patients do not tolerate it.  This can easily result in serious deficiencies, particularly EFAs.  There are several lipid products readily available in other countries that are becoming increasingly available in the US as well.

Cutaneous application of safflower oil in preventing EFA deficiency in patients on TPN
Smoflipid® Launched in the United States

Swimming with a central line:

"These results suggest that swimming does not increase the risk of catheter-related infections in children with tunneled catheters."

Additional questions and considerations regarding enteral feeding and TPN:

Traveling with IV Nutrition or Tube Feeding Webinar

Products designed for use with central lines and feeding tubes (and how to make some of them yourself):

Tubie Resources, Backpacks, Tubie Pads, and How My Feeding Tube Helps Me