Food Allergy Living Blog Tagged Results

We’ve talked about Short Bowel Syndrome (SBS) in previous posts. Our last post on SBS talked about how the small intestine is the absorption hub on the GI tract. When part of the small intestine is removed, you lose that important area for water and nutrient absorption and your body is no longer able to utilize the food and liquid that you consume. For this reason, total parental nutrition (TPN) may be necessary at first. Remember that TPN is nutrition that is delivered straight into the blood stream, rather than going through the digestive tract. The digestion and absorption processes are skipped.

Although this can sustain someone, there are many risks associated with TPN and in order for the remaining portion of the small intestine to adapt, it is very important to start enteral nutrition (EN) as soon as possible. Recall that EN is where nutrition is delivered through the digestive tract, either through a feeding tube or by eating regularly. So what exactly does it mean for the small intestine to adapt? We’ll focus on this subject in today’s blog post!

What is intestinal adaptation?

After a significant portion of the small intestine is removed, the remaining small intestine goes through a process of adaptation that increases its ability to absorb water and nutrients. What changes are involved in adaptation?

• The remaining portion of the small intestine may grow slightly in length
• The remaining portion of the small intestine may grow in diameter (width)
• The inner lining of the small intestine grows, increasing in surface area and the ability to absorb

The growth of the inner lining and absorptive capacity is perhaps the most important feature. How does the growth of the inner lining improve the ability to absorb nutrients? Think about a sponge, which we use to absorb liquid. The reason that it absorbs so well is the nooks and crannies which give the sponge a large surface area. Think about a 2 by 2 inch sponge in comparison to a 2 by 2 inch wood block. The sponge will absorb much more due to the high surface area. The growth of the inner lining of the intestine increases the surface area to form nooks and crannies so that it can absorb efficiently, like a sponge.

The prognosis of a patient with SBS depends on how well their gut adapts. If the remaining portion adapts enough, it will be able to compensate for the lost portion of the intestine. Once this happens, TPN can be stopped because the digestive tract is now able to absorb enough nutrients and water from the diet.

Can you support the adaptation process or speed it up?

Intestinal adaptation can take up to 2 years to occur. The best way to support gut adaptation is to eat! Consuming some foods by mouth or through a feeding tube triggers the release of certain hormones and promotes blood flow to the GI tract. The hormones and blood flow promote the adaptation process. This is why it’s so important to start enteral nutrition as soon as possible. TPN continues to deliver the bulk of nutrients that the patient needs to live and be healthy, so the food in the digestive tract is not expected to fulfill this role yet. But little by little, the patient is able to tolerate more foods through the GI tract and able to absorb more and more nutrients until eventually, their gut has adapted enough to allow them to stop the TPN. Check out our previous post on how Neocate can help children with SBS wean off of TPN sooner.

Researchers are studying ways to help the gut adapt quicker and function better. You can check out some of the research being done on SBS online at clinicaltrials.gov.

To view a true story about a little girl with SBS who is in the adaptation process, check out this video, Elizabeth's story,fromJohns Hopkin's Children's Center.

I hope this post helps you to better understand SBS and how gut adaptation works. If you have any personal experiences, please share them with us!

-Mallory

Many Neocate babies and children receive their formula through a feeding tube. Enteral tube feeding provides nourishment to individuals who are unable to consume adequate nutrition by mouth. If your child uses a feeding tube, you know that there may be some occasional tube feeding complications. This blog will provide some general troubleshooting tips for the most common tube-feeding problems.

Clogging of the Feeding Tube:

Sometimes a feeding tube will become blocked so that no food can go through.

How to fix:

• First, using a syringe to gently remove the liquid on top of the blockage, if possible (throw away the fluid removed).
• Next, gently flush the tube using lukewarm water, using at least a 30 ml syringe. Gently plunge the water back and forth to clear the blockage.
• Unless directed by a health care professional, do not use acidic solutions such as fruit juices or cola as they may curdle the tube feed.
• If the tube is still clogged, clamp the tube for around 10 minutes and then try flushing it again.
• If the tube the clog remains, gently squeeze the tube between your fingers along the length of the tube as far as possible.
• If you are still unable to clear the blockage, contact your health care professional for advice. Sometimes, the physician will prescribe a special enzyme which can dissolve the clog. If the clog cannot be cleared, the tube will have to be replaced.

How to Avoid:

• Tube Flushing is the most important factor for preventing the feeding tube from clogging. Use a syringe to flush 20 mL or warm water through the feeding tube before and after feedings and medications (or as directed by your health care professional). If your child receives a continuous feed, your health care provider may recommend flushing with water during the feed to prevent clogging.
• Use liquid medications whenever possible. If pills are necessary, crush them well and mix them with a small amount of warm water. Use a syringe to draw up the solution and insert it into the feeding tube. If pills are coated or time-released, discuss this with the physician because these types of pills are typically not meant to be crushed.
• Do not mix medications together and do not mix medications in formula unless instructed to do so by your health care provider.

Tube Site Irritation or Infection:

Redness, pain, swelling or unusual/excessive drainage, as well as fever, can all be signs of an infection at the stoma site (the surgical opening through which a gastrostomy tube (g-tube) or jejunostomy tube (j-tube) enters the stomach or small intestine).

How to Avoid:

To avoid infection, it’s important to keep the stoma site clean and dry. Your health care provider should give you specific recommendations for how to clean the stoma site each day. For more information on keeping the stoma site clean (from a parent’s point of view), check out this informative article from Complex Child E-Magazine.

A Dislodged Feeding Tube:

If the feeding tube comes out, call the doctor and go to the hospital right away. The stoma can close up very quickly so the tube needs to be replaced promptly. Cover the site with clean dressing or bandage to prevent leakage and immediately seek medical attention.

Sometimes the health care provider will train you to replace the feeding tube yourself (temporarily or permanently) but you should ONLY do this if directed and properly trained by your child’s physician.

How to Avoid:

Young children occasionally pull the tube out themselves. Keep the tube covered with clothing to prevent this. Onesies work well for infants and toddlers. It’s also important to secure the tube during activities so that it doesn’t get pulled out. You can use various methods to secure the tube. Some companies make special wraps and clothing for protecting and accessing the feeding tube:

• Gus Gear
• Bundie Baby
• Tummy Tunnels

Do you have any troubleshooting tips to share with other tube-feeding families? What problems have you encountered and what tricks have you learned?

- Mallory

Although most Neocate-users drink their formula, many patients receive Neocate through a feeding tube. This is referred to as “enteral nutrition”. Those of you with tube-fed little ones are already experts on the subject, however, I hope this post will be useful for those of you who are new to tube-feeding or for those of you who are just interested in learning how it works.

Tube-feeding provides nutrition to someone with a medical condition that impairs his/her ability to eat or drink (or impairs their ability to consume enough to sustain his/her nutritional needs). Nutrition is provided by a special liquid food that is given through the tube.

The liquid food contains all components of nutrition (protein, fat, carbs, vitamins and minerals) so it provides everything a person needs to live and be healthy. Some people are exclusively tube-fed while others continue to eat food while supplementing with tube-feeds. Fluids and medications (most of them) can also be given through the tube (which is a nice perk for kids who require some bad-tasting meds!).

Types of Feeding Tubes

There are various types of feeding tubes. A nasogastric or nasoenteral tube is inserted through the nose into the stomach or small intestine[1]. Alternatively, a tube may be surgically inserted through the skin and directly into the stomach or the small intestine in a procedure called a gastrostomy or jejunostomy, respectively. You may hear these refered to as a “g-tube” (short for gastrostomy tube) or a “j-tube” (short for jejunostomy tube). Patients with g-tubes may get a feeding port (commonly known as a MIC-KEY button or a mickey tube), so that the outside feeding tube only needs to be attached during feedings.

Methods of Tube-feeding

There are 3 ways that tube-feeds are administered:

• Gravity: With gravity feeds, a bag of formula hangs above the patient so that the formula flows down the tube.
• Syringe: With syringe feeds, formula is administered by hand using a syringe to push the formula through the tube.
• Feeding pump: An electronic pump moves formula through the feeding tube at a controlled rate. Common brands of feeding pumps include the Kangaroo pump and the Infinity pump.

Feeding Rates

• Bolus feedings: Bolus feedings are relatively large in volume and given over a relatively short period of time. Feedings are given several times a day and the schedule more closely resembles “mealtimes” in comparison to a continuous feed.
• Continuous/drip feedings: Feedings that are given at a slow rate, over a relatively long period of time. Continuous feeds may be indicated for patients who are unable to tolerate large volumes.
• Combination: Some people may do a combination of both types. For example, they may receive bolus feeds during the day and a continuous feed overnight.

Enteral nutrition is such an amazing example of the impact that medical technology has on our lives. Before there was enteral nutrition, the inability to eat was a life-threatening situation. Although nobody wants to rely on a feeding tube unnecessarily, it is such a blessing for those who could not live without it.

My younger sister Caroline got her G-tube about 2 years ago (she was 11). We tried to avoid it for so many years but once she got it, it turned out to be such a blessing in disguise! She has never looked healthier; she gained some much-needed weight, her hair and skin look so much healthier, and she’s so much stronger. Our family is so thankful for it! If you have come across this post because your little one is getting a feeding tube, I hope this gives you a new and optimistic perspective!

Do any of you have experience with a feeding tube? What impact did it have on your child’s life? What are the biggest obstacles you experience with a feeding tube?

-Mallory

[1] American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.). http://www.nutritioncare.org/wcontent.aspx?id=266>

Our post today is a guest blog entry from Renee O'Donnell, Baby N’s mom. Baby N has Food Protein Induced Enterocolitis Syndrome (FPIES) and her mom Renee is hard at work raising money for the FPIES United Family Fund. We’d like to thank Renee for guest blogging for us.

My name is Renee; I am a wife and a mother of three magnificent children. My youngest has FPIES (Food Protein Induced Enterocolitis Syndrome). She was diagnosed at 8 months after one of the longest battles of our life.

Our journey started the day we found out we were pregnant. Every mother becomes overjoyed with the thought of having a beautiful healthy baby. But to even think for one moment that something could be wrong is unfathomable.

Three weeks early baby “N” came. Everything was fine until her first bottle. Breast feeding was not an option due to some medicine I needed to go back on. We started her on regular formula. She drank it like a champ. But two hours after the bottle that was suppose to bring her nutrition, she started screaming and vomiting. We changed her to Soy and saw no change. After seeing our local pediatrician again and changing formula again. I asked to see a GI doctor.

The first thing I said to the doctor when she walked in to that room was “I think my daughter has protein intolerance!” At this point I had never heard of FPIES and neither had the doctor’s that had been seeing her. The doctor agreed that I could be right and put her on Neocate. This was our life savior. Who knew that one formula would change everything. There was no more vomiting, screaming, bloody diapers, rash, and even the movements that we thought were seizures seem to go away. We later learned these movements were Sandifer’s Syndrome.

After a few months of a happy little girl, we decided to try rice cereal. Rice cereal is suppose to be safe for everyone right?? The answer to that was NO, not to most FPIES children. We ended up in the ER hooked up to IV fluids. It was one of the scariest moments of our lives.

At that point I realized that something needed to change. We needed to get a second opinion. After seeing multiple doctors I had found an article online about a few kids having similar conditions. We contacted a Doctor in New York that gave us a name of an Allergist in our state.

It was then at 8 months old that we were finally heard and given a diagnosis. “Your daughter has FPIES.” Such bitter sweet words to hear. Yes, this was going to be neither simple nor easy. But for someone to tell us what was wrong with our child felt like a huge weight was lifted off our shoulders. We could start to work on what was going to make her better and not fighting to get the doctors to see that there was something wrong.

We still have a long battle ahead of us and many other medical problems to overcome. But at this moment we are just staying strong and working on getting our little one to grow. She currently has a GJ tube that we are putting Neocate Junior in and she is now taking Neocate Junior Tropical by mouth. Our hope is that more doctors will become aware of FPIES and understand the importance of starting babies like my little one on formulas like Neocate.

Did you know that Feeding Tube Awareness Week is happening right now? It is! This year Feeding Tube Awareness Week falls on February 5-11. You can help the Oley Foundation  and Feeding Tube Awareness Foundation  (FTAF) spread the word.

We know, many children who benefit from Neocate products have to use a feeding tube to get their nutrition.  If you’re new to tube feeding and are looking for folks who share similar stories, try the Oley Foundation’s support community or the FTAF’s inspiring stories. You can also visit the Oley Foundation’s facebook page and FTAF’s facebook page. 

The FTAF launched Feeding Tube Awareness Week last year with great success! Both organizations’ websites have some great tips for how you can help spread the word. Ideas include contacting local media outlets as well as using social media platforms. This is a great opportunity to help raise awareness of feeding tubes in your community to promote greater acceptance and understanding. 

To someone who isn’t familiar with feeding tubes, they can be strange and confusing. On one hand, parents can have a tough time adjusting to tube feeding. On another, people in the community don’t always know how to react to feeding tubes. You can help inform others about how many precious little ones’ lives have been improved and saved with the help of feeding tubes.

Is there something you’ve done to help promote feeding tube awareness?

- Rob 

[Image name: Feeding Tube Awareness Week - Image link: http://www.oley.org/Tube_Feeding_Awareness_2012.htm]

[Image name: Feeding Tube Awareness Logo - Image link: http://www.feedingtubeawareness.org/raising-awareness.html]