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

Today's post is a guest blog written by Jodi Berndt. In honor of Feeding Tube Awareness week, Jodi shares her daughter, Allie's story. We'd like to thank Jodi for taking the time to share her family's story with us and raise awareness about feeding tubes.

At this very moment, many parents are facing the reality that their child may need a feeding tube. How do these parents know if a feeding tube is right for their child? Most parents know very little about feeding tubes or what they have to offer.. Feeding Tube Awareness Week (February 6-12, 2011) is to help raise awareness of enteral feeding as a positive and often life-saving medical intervention for those who are unable to eat and drink enough to sustain life, grow and thrive.

This is Allie Berndt’s story. Allie is a 2 ½ year old little girl who weighs 24.6 pounds and is 33 inches long. Her feeding tube saves her life every single day!

Allie was born full term on April 30, 2008 weighing in at 5lbs 8 oz and 16.5 inches long. Shortly after birth, we noticed that Allie wasn’t drinking as much breast milk as a typical newborn, however we never imagined this was the beginning of her long medical mystery.

For 4 months, we tried breast milk and numerous formulas but Allie would not drink more than 2oz at a time. Her Pediatrician started tracking her weight, height and head circumference. Allie continued to fall off the growth chart. When we introduced solid foods at 6 months old, we knew immediately that something was wrong because Allie would never eat more than a quarter of a jar of baby food. We met with numerous local pediatricians and nobody could figure out why Allie wouldn’t eat. Our family pediatrician finally referred us to the Children’s Hospital of Wisconsin (CHW) and we met with our first team of specialists when Allie was a year old.

At this point, no diagnosis and no progress had been made with her oral intake. Allie was shrinking by the day. The CHW feeding clinic evaluated Allie and immediately started running tests to figure out why she refused to eat. It was obvious that Allie had the ability to eat but she just was not interested in food.

We met with the CHW feeding team every other month for 8 months and at each appointment more tests were ran. All the tests were coming back normal so we were encouraged to enroll Allie in a 1 week outpatient intense feeding intervention and to start Allie on an appetite enhancer. We agreed, and in October of 2009 Allie started her feeding intervention and medication. Neither technique worked and Allie continued to avoid food at all costs.

Our little girl was slipping away from us. She was 20 months old and completely mute. She had gone from saying several words to not speaking at all. Her balance was awful due to major muscle deterioration. Allie’s brain had stopped developing properly and she was losing skills she had used weeks before. At this point the doctors had done nothing except mention that down the road Allie may require a feeding tube. We didn’t know anything about feeding tubes and what it could offer for Allie; however when our occupational therapist met us for the first time on December 8, 2009 and looked me straight in the eyes and said, “Allie looks awful. How come she doesn’t have a feeding tube for proper nutrition?” That’s the day I opened my eyes and decided I had to stand up for my little girl because nobody else was going to. We met with the CHW feeding team on December 9, 2009 and I spoke loud and clear stating we were not leaving this hospital until Allie had a feeding tube.

How do you know when the time is right for your child to receive a feeding tube? That is the million dollar question many parents are struggling to answer. Obviously every child is different so every parent has a different answer, however in our situation, I truly believe we and the CHW feeding team failed Allie because she should have had a feeding tube at least 8 months earlier. Allie’s brain didn’t have to start deteriorating; she didn’t have to lose her ability to speak or her ability to walk straight. If Allie would have had her feeding tube earlier in life, she probably wouldn’t have some of the struggles she has today.

In December 2010, Allie was diagnosed with a severe corn allergy (Type IV – delayed reaction) and gluten sensitivity. Due to her severe corn allergy, there are very few enteral feeding formulas out there that are safe for her.

She had a lot of vomiting problems before we found our best friend – Neocate Jr. Neocate Jr. has been all of the doctor’s and dietician’s #1 choice for Allie. We started Allie on Neocate Jr. and a blenderized diet and we saw an improvement within 5 days. She is handling her feeds much better than before and her vomiting has stopped. We are also seeing a big difference in her behavior. Since Neocate Jr. and our blenderized diet do not contain any corn protein or gluten, Allie’s chronic pain has diminished and she is feeling much better every day.

In addition to the Neocate Jr., Allie also consumes Neocate E028 Splash orally. E028 Splash is Allie’s first choice when it comes to an elemental formula. E028 Splash comes in different flavors and Allie enjoys picking out a different flavor every day. Looking back, there are two things I wish we would have been informed about when starting Allie’s medical journey:

1. The feeding tube is not a bad thing! It has saved our child’s life and continues to save her every day. For many children, a feeding tube is temporary and sometimes is only needed for a short period of time. If your child is not consuming enough orally to gain or even maintain weight, I highly recommend you talk to your doctor about a feeding tube. My one regret is not being proactive and requesting a tube for Allie as soon we knew she wasn’t able or willing to consume enough calories to thrive on her own.
2. I wish we would have put Allie on the Neocate formula and a blenderized diet sooner. Allie struggled for a long time with vomiting and tolerance issues. Neocate Jr., E028 Splash and a blenderized diet have worked wonderfully for our little girl and overall she is much happier. Allie is now growing and thriving like every little princess should. Thanks, Neocate for providing such wonderful products!

Allie’s refusal to eat remains a mystery but we are continuing to search for a diagnosis. Here is a video of our journey, which started on April 30, 2008.

During Feeding Tube Awareness Week, please take the time to share your story, or Allie’s, and help spread positive awareness of enteral feeding. Let’s inform everyone of this wonderful life-saving medical intervention that is helping so many children at this very moment. For more information on feeding tubes, please check out: www.feedingtubeawareness.com.

Thank you,

Jodi Berndt

Want to learn more about Feeding Tube Awareness Week? Check out this Feeding Tube Awareness Video!

Links:

Allie's Video

Feeding Tube Awareness Video

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

Our post today is a guest blog entry from Anne Moore. We’d like to thank her for guest blogging for us.

I am the proud mother of two adorable little boys ages four and seven. Both of my beautiful boys were born at exactly thirty-nine weeks and weighed nearly nine pounds. So what made our second child so different from our first?

His name is Joseph, but his brother mispronounced his name and said Jofas the day he was born. Joey had a rough start and although he is now a vibrant four year old kid, he still faces challenges.

For example, he tires more quickly than the average four year old. I believe this fatigue is directly related to a weakened immune system that is continually fighting inflammation caused by severe allergies. His known food allergies are dairy, soy, eggs, red 40 and nuts. Once I knew the truth about his many allergies, I dedicated every day to being the best “allergy mom” I could be. Unfortunately, his allergies were not known until he was eleven months old. Sure, I recognized some tummy discomfort and extremely rough itchy skin but I had no idea of the severity of his allergies at the time.

I was an experienced breastfeeding mom and was determined to give Joey the same benefit of mother’s milk. Due to my own allergies, I had already eliminated dairy from my diet. Therefore, I did not consider the possibility that other ingredients in my own diet might be contributing to Joey’s allergies. And, at the time I was primarily focused on his main eating problem.

You see, Joey was born with a floppy epiglottis. He latched on correctly and went through the motions of nursing, but he failed to thrive. Simply put, he was aspirating the liquid and not gaining weight. After many exhausting days and a swallow study, my two month old was put on an NG tube indefinitely. At that moment I decided to pump my milk. I managed to effectively pump for eleven months! The children’s hospital said they have only seen two mothers successfully pump exclusively.

The pumping routine was exhausting. My “tubie” needed to eat a set amount every three hours around the clock. Each three hour process included pumping, cleaning the tubes and pumps, feeding Joey and then putting him back to sleep. This allowed about one hour consecutive sleep before the process repeated.

I quickly figured out that holding my baby and a tube full of milk up in the air was just not working for us. I still find it difficult to understand why mothers are advised to feed their baby in this manner.

We decided to create a mother’s third arm. The resulting product, The Jofas Clamp, is portable and easy to use. It attaches to any surface via a clamp and adjusts by simply moving it up and down. We have dedicated this device to Joey and hope you visit http://www.jofas.net/ to learn about this wonderful feeding aid. We need to nurture our babies while feeding them via a tube and I sincerely hope this product can help a “tubie mom” do just that.

Thank you for reading our story. I have learned that things do not always work out as planned. I genuinely understand the challenges of having a child with special needs. I know that feeding a child with food allergies or with a tube can be heartbreaking and at times a true hardship. I feel blessed to be a part of these support groups and I know that together we can get through the difficult times. I feel lucky and inspired to benefit from wonderful companies, like Neocate, and to know amazing people who are working towards improving the lives of our children.

- Anne

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>

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]

Birthday cakes are so much more than just the ingredients that go into them. They are symbolic of accomplishment, celebration and childhood in general. Each birthday cake is a milestone for another celebrated year of life. Every parent feels an instinctive need to provide their child with a birthday cake.

When your child has a food allergy or other condition limiting the food that they can eat, a typical birthday cake may not be an option. I am always amazed by the measures that parents take to provide a suitable birthday cake for their child. I’ve talked to parents who are traveling to different stores all over town to gather allergy-safe alternative ingredients for their masterpiece cake.  If you are looking for an allergy-friendly cake recipe, there are several in our Food Allergy Cookbook. Please keep in mind that allergy-friendly doesn’t necessarily mean allergy-free so be sure to check if the ingredients are appropriate for your child’s specific food allergies. For some more tips on allergy-friendly birthday parties, visit http://www.foodallergy.org/page/birthday-party-tips-.

For kids who are not able to eat food at all, this is an even greater challenge. In these cases, parents get extremely creative making fun, non-edible birthday cakes. For example, Connor’s birthday “Neo-Cake” or Sy’s foodless bowling cake. My sister Caroline has a feeding tube but up until last year, she was able to eat SOME food by mouth so we always just got her a regular birthday cake. She can no longer have any food by mouth due to swallowing problems so this year, I made her a fake pink and purple princess cake out of cardboard, foam paper, ribbon, tissue paper and glitter paint (pictured below). We poked little holes in it and inserted candles for her to blow out. Her favorite part of birthdays is singing and blowing out the candles so she didn’t even seem to miss eating cake. In fact I think she loved this foodless cake even more because she can keep it and we can relight the candles and sing over and over again (although she might think she is 300 years old by now).

The moral of the story is that food restrictions don’t have to stop you from giving your little one a happy birthday. When it comes down to it, birthdays are not about the cake but about the effort that goes into making your little one feel special on their day. With a little creativity, you can still have a great time celebrating another year and milestone.

Have a great allergy-friendly cake recipe to share? Please do! We’d also love to see pictures of your creative foodless cake ideas!

-Mallory