As we’ve discussed in previous posts, short bowel syndrome (SBS) is a malabsorption syndrome that occurs in patients who have had a significant portion of their small intestine removed. In this post, I will explain a little more about how nutrient absorption works and why malabsorption is a problem for patients with SBS.
What exactly is Malabsorption?
Malabsorption is a difficulty in absorbing nutrients from food. There are 2 requirements for proper nutrition: 1) you must consume nutrients from food, supplements, formula etc. and 2) your body must absorb these nutrients from the digestive tract so that it can be used throughout the body. Without absorption, your body is not able to access any of the nutrients found in food that you consume.
The Small Intestine: The Absorption Hub of the Digestive Tract
The small intestine absorbs about 90 percent of the nutrients and fluids your body needs to function.Although it is smaller in width compared to the large intestine (hence the name small intestine), it is actually the longest portion of the digestive tract and composed of three sections: the duodenum, the jejunum and the ileum.
So what makes the small intestine so good at absorbing nutrients? The answer is its high quantity of surface area. Believe it or not, the small intestine has the surface area of a tennis court! The lining of the small intestine (known as the epithelium) is not flat; it has folds of skin called “mucosal folds”. It also has villi, which are small finger-like projections and microvilla, which are tiny, hair-like structures. The combination of these 3 features results in the small intestine’s vast quantity of surface area and its ability to absorb nutrients so well.
Short Bowel Syndrome, Intestinal Adaptation and Nutritional Stability
Since the small intestine is so important for nutrient absorption, removal of even a small portion can cause malabsorption, such is the case with SBS. The severity of malabsorption depends on how much and which portion of the small intestine was removed. There are two main goals in treating a patient with SBS:
Intestinal Adaptation: The hope is that over time, the remaining small intestine will adapt by growing longer and increasing its ability to absorb nutrients. With successful adaptation, the patient will eventually be able to digest and absorb foods normally.
Nutritional Stability: During this adaptation period (which may take years), amino acid-based formulas, such as Neocate, are used to provide nutritional stability. Because the nutrients in Neocate are in their simplest form, they are easiest to digest and absorb. Neocate provides all the necessary nutrients required for a child’s growth and development to support health and wellness until the small intestine adapts and begins to function properly. (Interestingly, children with SBS are more prone to food allergies which is another reason why Neocate may be used with children who have SBS).
Hopefully this explanation helps you to understand the underlying problem with SBS and how an elemental formula such as Neocate is used to manage SBS. Do any of your children have SBS? What has been your experience with adaptation and nutritional stability?
Childhood obesity is one of the most challenging problems facing pediatricians today. About 10% of children younger than 2 years and 21% of children between 2 and 5 years are overweight.1 Young children with excess weight are at an increased risk of being overweight in the future.2 One interesting study that just came out in the Journal of Pediatrics (Dec 2010) compared the weights of infants who were fed cows’ milk formula versus those fed hydrolyzed formulas in which the milk proteins are partially broken down. Interestingly, the study results sound that the infants who were fed the cow’s milk formula gained more weight than the infants fed hydrolyzed formulas.
This finding is similar to another study that found that infants fed a cow’s milk formula gained more weight versus infants who were breastfed. They did note that the hydrolysate-fed infants consumed less formula to satiation than the cows milk formula group. No difference was seen in the length of the infants.
This finding was surprising to researchers, especially when more and more children are becoming overweight. Researchers are still unsure what would cause this difference, but one hypothesis points to the form of the proteins, which are whole in regular cow’s milk formulas, but partially broken down in hydrolysate formulas. One study notes that free amino acids stimulate sensory receptors in the oral cavity and /or gastrointestinal tract.3 In addition, previous research has shown that partially broken down protein chains stimulate a cascade of satiation signals, interestingly. Basically, the infants may have felt full sooner with the hydrolysate formula vs. with the cow’s milk formula.
More research needs to be done on this of course, but this does raise questions in regards to amino acid-based formulas. Will infants who are fed formulas such as Neocate have better weight profiles vs. infants fed milk-based formulas? We will keep our eyes peeled for more research and data on this!
Ogden CL, et al Prevalence of high body mass index in US children and adolescents, 2007-2008. JAMA. 2010;303(3):242-249.
Baird J, et al. Being big or growing fast; systemic review of size and growth in infancy and later obesity. BMJ. 2005;331(7522):929.
San Gabriel A, et al. mGluR1 in the fundic glands of rat stomach. FEBS Lett. 2007:581(6):1119-1123.
FPIES, or food protein induced enterocolitis syndrome, is a condition that I’ve been hearing about more and more lately. It is not particularly well-known, so I thought we could cover some of the basics in today’s blog.
What is FPIES?
FPIES is a disease that typically affects infants and young children. While it can mimic food allergies, the difference with FPIES is that it is a non-IgE mediated immune reaction in the gastrointestinal (GI) system to one or more specific foods. This means that the IgE antibodies associated with other food allergies are not involved in an FPIES reaction.
Cow’s milk and soy are the most common FPIES triggers, but ANY foods can cause an FPIES reaction (even ones that aren’t typically considered to be allergens like rice and oats).
Common Symptoms of FPIES
Most FPIES reactions happen when a child is very young – just a few weeks or months old. Often it happens when the first formulas or solid foods are introduced (breastmilk doesn’t usually cause an FPIES reaction, even if the mother has eaten a trigger food).
Each child is different, but the most common symptoms of FPIES involve the GI tract and can include projectile vomiting and diarrhea, which means that it is often mistaken for a stomach bug. There is almost always a delayed onset of symptoms - often vomiting occurs 2 hours after eating a trigger food, with diarrhea following 5 hours after eating. Some children experience relatively mild symptoms, while others have such severe vomiting and diarrhea that they can become seriously dehydrated and go into shock.
Diagnosing and Treating FPIES
It can be difficult to diagnose FPIES because blood allergy tests only look for IgE-mediated responses. Usually a diagnosis occurs after repeated reactions. Keeping a food journal may be helpful in identifying triggers if you think your child has FPIES.
Treating FPIES varies depending on the child, their triggers and reactions. For infants with FPIES an elemental formula like Neocate is often used. For some children who have fewer triggers treatment is simply to avoid those foods. Introducing new foods slowly – one at a time and for up to three weeks – is extremely important to identify both safe and trigger foods. If your child has an FPIES reaction, it is important that they remain hydrated to avoid going into shock.
Many children with FPIES outgrow the disease by age three, but this can vary based on how severe their symptoms are and which foods they react to. According to an article from Kids With Food Allergies, one study showed that 100% of children with FPIES reactions to barley had outgrown and were tolerating barley by age three, while only 40% of those with FPIES to rice, and 60% to dairy tolerated it by the same age.
To determine if your child has outgrown FPIES it is important to work with your doctor and evaluate it on a food-by-food basis. Atopy patch testing can help assess if your child is ready for an oral challenge in your doctor’s office or hospital (do not attempt without a doctor’s supervision!).
We hope this helps shed some light on an often confusing disease. If any of you have children with FPIES and can share your experiences, please leave a comment!
Short bowel syndrome and TPN can be overwhelming at times for parents and caregivers. If your little one is struggling we hope that the following information will be helpful for both of you.
Short bowel syndrome (SBS) is a digestive disorder that occurs when a significant portion of the intestinal tract does not function properly. It usually occurs as a result of surgery to remove a significant portion of the intestinal tract. In infants, this surgery may be needed due to necrotizing enterocolitis (a condition that occurs in premature infants and leads to the death of bowel tissue) or congenital bowel defects (such as midgut volvulus, omphalocele or gastroschisis).
Total Parenteral Nutrition (TPN)
Infants with SBS cannot absorb enough water, vitamins, and other nutrients from breast milk or formula to live. The main treatment is nutritional support. At first, total parenteral nutrition or TPN (where nutrition is delivered directly into the blood stream) is usually required because nutrients can’t be absorbed in the GI tract. There are many risks and complications associated with TPN so its best to minimize the amount of time spent on TPN. The hope is that with time, the gut will adapt by growing longer, increasing its ability to absorb nutrients and digest formulas and foods normally.
Gut adaptation is required in order to wean off TPN. It's crucial to introduce enteral nutrition (where liquid food is delivered to the GI tract rather than the blood stream) as early as possible. Patients may receive enteral nutrition or begin normal eating even though most of the nutrients are not absorbed and they continue to get most of their nutrition through TPN. Beginning enteral nutrition and normal eating stimulate the remaining intestine to function better. As the GI tract adapts and begins to function better, patients can be gradually transitioned off TPN. TPN cannot be totally stopped until the patient is able to tolerate enteral feeds and/or normal eating in quantities that can sustain all their calorie and nutritional needs.
Neocate Helps to Wean Off TPN Sooner
Because Neocate is an elemental formula, it is easy for the gut to digest and absorb. Studies show that beginning enteral nutrition using Neocate allows babies to come off of TPN sooner,. This is important because the longer a patient remains on TPN, the greater the risk for serious complications, such as life-threatening infections or liver dysfunction. Once off TPN, the special formulation of Neocate provides all the nutrition that a baby/child with SBS needs to grow and develop properly while their guts continue to adapt.
Do any of you have little ones with SBS who use Neocate? We’d love to hear your stories!
 De Greef E, Mahler T, Janssen A, Cuypers H, Veereman-Wauters G. The Influence of Neocate in Paediatric Short Bowel Syndrome on PN Weaning. J Nutr Metab. 2010;2010.
pii: 297575. Epub 2010 May 31.
 Bines J, Francis D, Hill D. Reducing parenteral requirement in children with short bowel syndrome: impact of an amino acid-based complete infant formula. J Pediatr Gastr Nutr. 1998;26(2):123-128
Quite often, we receive calls from families who are distraught and worried after trying five or six different infant formulas that their child with food allergies was not able to tolerate before finding Neocate, an amino acid-based formula. Often, the formulas they tried in the past were hydrolyzed, or hydrolysate, formulas (such as Alimentum and Nutramigen), which are labeled as hypoallergenic. So I often hear the question. “If this formula is hypoallergenic, why didn’t it work for my baby with food allergies?”
In order to answer this question, I’ll need to explain exactly what a hydrolyzed or hydrolysate formula is and how they differ from amino acid-based formulas, which are sometimes called elemental formulas. The main difference is: hydrolyzed formulas have partial milk proteins in them. Amino acid-based formulas, like Neocate, are milk-free and made up of non-allergenic amino acids, which are the building blocks of protein. That means there is a very slim chance of a child having an allergic reaction to them, as a typical allergic reaction is a reaction to protein.
The reason hydrolyzed formulas can be labeled as hypoallergenic is that the milk proteins in those formulas have been broken down (or hydrolyzed) so that the body’s immune system may not detect the proteins as being an allergen. But with the number of calls we get from families in distress over their little one not tolerating the hydrolysate formula, I can tell you that it is not always the fix-all for a child facing food allergies. This is where an amino acid-based formula comes in. It is sometimes stated that amino acid-based formulas are “super” hypoallergenic, or the least allergenic option. This could be interpreted to mean that amino acid-based formulas are more hypoallergenic than hydrolyzed formulas, although both types of formulas fit the American Academy of Pediatrics' (AAP) criteria that an infant formula must meet to be labeled hypoallergenic.
In general, studies show that amino acid-based formulas are tolerated by almost all severely food-allergic babies. Although many food allergy babies tolerate hydrolyzed formulas, there is a subset that do not - often having symptoms like severe diarrhea, vomiting, rashes and failure to thrive. If you're concerned that your little one isn't tolerating a hydryolyzed formula, talk to your baby's doctor.
A review of scientific research addressed the intolerance concern with hydrolyzed formulas by stating that “there are clinical benefits from the use of amino acid-based formulas in both symptoms and growth in infants and children with cow’s milk allergy who fail to tolerate extensively hydrolyzed formula”1. Another study showed that up to 30% of babies with complex food allergies did not tolerate the hydrolyzed formula ised inthe study2. This is important to know especially if your little one (or someone else’s infant) is still displaying signs of food allergy and is currently using a hydrolyzed formula.
Did your child not tolerate a hydrolyzed formula? What did you do?
1 Hill DJ, The efficacy of amino acid based formula in relieving the symptoms of cows milk allergy-A systematic review. Clin Exp Allergy. 2007. 2 Latcham et al, A consistent pattern of minor immunodeficiency and subtle enteropathy in children with multiple food allergy. J Pediatr. 2003.
Our post today is a guest blog entry from Lorelei Alvarez, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.
Roland Edward Alvarez
Born December 6, 2008 Roland is an 18 month old toddler who is now perfectly happy and healthy (although fairly small for his age). To be around him now, you would never know the rough start he had in life or the struggles that he still has with certain foods. Due to a traumatic delivery, Roland spent some time at birth in the hospital. He wasn’t able to nurse, and was tube-fed pumped breastmilk. Within just a few days, he began showing signs of dairy protein intolerance, including excess fussiness and gassiness just after eating, arching, vomiting, mucus in his stools and diarrhea. His mom eliminated dairy from her diet and that seemed to improve his condition some and he started gaining a little weight. After a couple weeks, Roland was weaned from the tube and sent home. Unfortunately, once at home, his symptoms continued to get worse. He had difficulty gaining weight, vomited after most bottles of expressed breastmilk, had constant mucus in his stools, frequent diarrhea and it was often extremely acidic. He had frequent weight checks with his pediatrician, and was diagnosed with reflux at around 4 or 5 weeks and started on Zantac, which did nothing to improve his symptoms. In the mean time, his mother started researching about milk protein intolerances and discovered that many babies with issues with milk are also soy intolerant so she eliminated all soy from her diet as well.
Roland at 3 months, Pre-Neocate
Unfortunately, the elimination of soy did little for Roland and his overall health continued to decline. He began projectile vomiting after every bottle of pumped breastmilk and the acidic diarrhea became constant and multiple times each day. In desperation, his mother attempted a total elimination diet, eating only a handful of different foods and eliminating all possible allergenic foods. Nothing seemed to work for poor Roland.
Not All Hypoallergenic Formulas are the Same
His mother’s supply of breastmilk began to dwindle, and it became necessary to supplement with formula. His parents first tried a hypoallergenic formula. Roland was just a little over 3 months at that point and weighed less than 8 pounds. After less than a week supplementing with Nutramigen, Roland took a turn for the worse. He began completely refusing to eat other than in his sleep, vomiting everything, losing weight, having horrible, acidic diarrhea up to 10 times per day and had blood in his stools. His mother again researched and discovered that the hypoallergenic formulas do contain dairy proteins even though they are very broken down and learned about elemental formula through Nutricia’s website and through moms with a group called the Reflux Rebels. Roland’s parents took him once again to the pediatrician and during that visit, it was decided to move him completely to an elemental diet. Roland began a Neocate only diet at a little over 3 months along with a PPI to heal the damage from the reflux and vomiting. Within 2 weeks of the Neocate, most of Roland’s lower GI issues resolved. His stools became fairly normal, gassiness and painful stomach cramping began to clear, and chronic diaper rash began to clear. And, he finally began gaining weight. He remained small, but at least began following the growth curve.
The elemental formula likely saved his life, as it became clear later that Roland probably suffers from a condition known as FPIES (Food Protein-Induced Entercolitis Syndrome). Usually this syndrome doesn’t really become clear until solids introduction, but unfortunately Roland’s condition was severe enough that he reacted to the proteins in his mother’s milk. Solids introductions for Roland were difficult and he reacted to several other foods including rice and corn. Eventually he was able to handle very broken down dairy proteins and could tolerate first the hypoallergenic formula and eventually a toddler formula that is not quite as broken down. His issues with soy are less severe as well. Fortunately for Roland, FPIES reactions are typically outgrown around age 3, but until he is able to tolerate the whole proteins in dairy, soy, rice, and corn, his parents need to monitor his diet closely to prevent horrible flu-like reactions. After about 6 weeks on the elemental formula and PPI, Roland went from an exceptionally uncomfortable, clingy, miserable infant who never smiled or slept to a completely independent, fun-loving, easy to care for baby. It was literally a night/day transition. His parents were also able to take him off of the reflux medication fairly early as his issues with reflux and vomiting were due to the protein intolerance. Unfortunately for Roland, living the first 4 months of his little life in chronic pain created an oral aversion that has continued well into his second year of his life. Eating is generally a struggle for him and could be for years.
Our post today is a guest blog entry from Brittney, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.
I'm Brittney, a stay-at-home-mom to three beautiful kids; 2 bouncing, beautiful girls and a sweet baby boy.
My journey with infant reflux and severe food allergies started when our second daughter, Elliott (Ellie), was born. Ellie immediately started with symptoms of what I now know as reflux and Milk/Soy Protein Intolerance (MSPI) (for Ellie, her reflux was a by-product of her untreated MSPI and various food allergies).
In the hospital she appeared to be a normal newborn. She was a little “spitty” but nothing that struck us as odd. She only had one bowel movement in the hospital and thus began our journey to what seemed like hell and back. When Ellie was four days old we went to the new pediatrician because her belly was distended, she hadn't had a bowel movement since we left the hospital, and she was visibly in pain. We were told to put her on soy formula (which our first daughter was successful with) and to try a few home remedies to relieve her constipation.
In the midst of the formula change and adjusting to life with a newborn again, symptoms of severe reflux appeared. Ellie went from screaming for a few hours a day off and on to screaming bloody murder for hours on end. In desperation, we went back and forth to the pediatrician begging for help and answers. We were told countless things. She just has colic... She'll outgrow it... Try some cereal... etc., etc.
We were put on medications such as Axid, Zantac, Erythromycin, Prevacid capsules, and Prevacid Solutabs. Finally one night after Ellie screamed for 22 hours straight and the pediatric nurse assuring me she just had “colic”, we made the decision to go back to our previous pediatrician across the state line. The next morning we were seen by our current, open-minded (and amazing!) pediatrician and have never looked back. Ellie was started on 30mg of Nexium a day and switched to Neocate, an elemental formula for kids with severe food allergies.
Throughout the following months, Ellie underwent countless procedures, x-rays, blood draws, ultrasounds, and doctors’ visits to get her condition under control. We trialed and failed food after food after food with her. We were told all of those common myths by the GI and the only thing we were left with was frustration and a daughter completely and utterly miserable. After a few months of being on the Nexium and Neocate combination, things started to look up. By a year she was a new baby and now, at 2, I don't even recognize the once miserable baby she was. She brings such joy to our home!
When our third child, Cohen, was born, I noticed his bowel movements were filled with mucous (a tell-tale sign of a milk intolerance). I immediately cut all dairy from my diet. A week or two later I cut all forms of soy. Like Ellie, while we were trying to get his milk situation under control, I noticed reflux starting to creep its way in (both a mechanical issue and an MSPI by-product for Cohen). We wasted no time and went back to our pediatrician to get him a proper PPI (30mg of Nexium also) at MARCI-kids dosing standards. After 7 weeks of continuously mucousy and bloody stools, the decision was made to also put Cohen on Neocate. Within two weeks of being on the Neocate and Nexium combo, he was good as gold and within 6 weeks, his stools were perfect! He's a happy, healthy, BIG, 7 month old now. He's the perfect (and final!) addition for us!
Why all the details?, you ask. I share the details with you to let you know that I can relate. I have been there and done it all.
I've dealt with the horrible doctors and the nurses who act like you're insane.
I've been there with the screaming, inconsolable infant.
I've been there fighting with the insurance to cover this particular test and that particular medication.
I have been there fighting with my spouse because of all the tension having a GERDling and allergy baby brings.
I have been there. And now I want to be there for you. Our group, and The Reflux Rebels website, was created out of our desire to see no parent, family member, and infant have to suffer like ours have. We hope that you will find this information useful and informative.
And as always, know, It's not “just colic”
I, along with Lauren, created The Reflux Rebels in January of 2009. Since then it has grown to over 1,800 members. In late 2009, Lorelei and Kim joined us as co-owners of The Reflux Rebels. We are currently in the process of becoming a legal non-profit organization and strive to give back to our community and those in need.
We get a lot of questions from food allergy families about how to get insurance to cover elemental formula like Neocate. While some insurance companies do reimburse families for these formulas, many do not.
At Nutricia, we feel strongly that formula reimbursement is something insurance should do. And since too many insurers are not providing this important coverage, state laws should make sure that they do. After all, any parent who has had to watch their child endure the misery of food allergies, dairy and soy protein intolerance (MSPI), eosinophilic esophagitis (EE) or gastroesophageal reflux (GER), realizes how medically necessary elemental formulas are for certain kids.
The good news is that 13 states have some type of formula reimbursement legislation. The bad news is that only 13 states have some type of formula reimbursement legislation.
That’s why Children’s Magic exists. Children’s Magic is non-profit (a 501c4) organization. Their mission (straight from the website) is:
Children’s Milk Allergy and Gastrointestinal Coalition (MAGIC) is committed to promoting healthcare coverage and reimbursement of amino acid-based elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases.
They are working hard, state by state, to introduce new laws (or expand old ones) to ensure that insurers provide this coverage to the families who so desperately need it.
But, they can’t do it alone. They often need help from families like yours to rally grassroots support for legislation in your own communities.
Our post today is a special 2 part guest blog entry from Brenda Eich. Brenda was instrumental in getting several insurance companies in South Dakota to sign an agreement guaranteeing coverage of amino acid-based formulas. We would like to thank her for sharing her story with us. This is the second part of her story.
Check out the first part of Brenda Eich's amazing journey to get medical insurance coverage for amino acid-based formulas in South Dakota.
Working with South Dakota's State Legislature
I asked an old freiend who is an attorney who I should reach out to. He gave me the name of our South Dakota State Representative - and actually the gentleman who represents my district! I met with our (wonderful) South Dakota State Representative, Todd Schlekeway. I asked him to come to our house and I showed him printed out information from Children's Magic. He was intrigued by a few things. One: that Medicaid and WIC covered Neocate; two: that it was medically-necessary; and three: it is needed by only a fraction of children so the cost to the insurance company would be minimal.
Representative Schlekeway left our house with a packet of information to read. I started a grassroots effort. I appeared on our local KELOLAND television station over the dinner hour. It didn't take much to get a following. People are very interested in children's issues. I told our personal story of allergies and medically-necessary Neocate -- and no insurance coverage but (hopeful) coverage with my new friend, Representative Schlekeway. The story was also online and gave a link to my email. I started to receive many emails! I started a spread sheet to keep the names, child's name and age, insurance company, email and address in one place. My database grew to around 30-35 families.
Initial Roadblocks Didn't Stop Us!
We began to meet as a Food Allergy Group at the local hospital and our meetings quickly turned into a "How can we get a law passed?" group. The hospital actually denied our meeting at their facility - but it didn't stop us or some of the doctors who supported our efforts. We met at a community center!
Representative Schlekeway and I tweaked our bill several times (with the help of several GI doctors and an insurance company) until we had just the right wording. It was give and take but I wasn't going to rest until it covered what these children needed. It was several weeks until he needed to introduce the bill into legislation, but it became huge leverage for us. Representative Schlekeway continued to say that we needed to educate our representatives and senators so we would get better results. He spent hours meeting with insurance companies and educated them on food allergies and this medically necessary product - Neocate.
In the meantime, I kept in close contact with Representative Schlekeway. He asked several times for our group to send out emails to the representatives or senators or both groups. We wrote heartfelt stories with pictures of our little ones attached to the email. We told of how our children desperately needed this medically necessary product and how it wasn't covered by insurance. One gal who worked for the state talked about quitting her job so that she could get it covered by WIC, but in the long run decided to keep the job she loved and pays for Neocate out of pocket.
Finally! Some Progress with Insurance Coverage for Neocate
One day Representative Schlekeway called and had just left a meeting with my insurance company, and they unanimously agreed to cover Neocate for their insurers! This was the insurance my family had!! Neocate would be covered forour little guy!! It brings tears and a big lump in my throat as I type. It was such an overwhelming phone call. Years of Neocate and finally, it was going to be covered by our insurance company! They really believed it was medically necessary and needed to be covered. God is good.
That insurance company was then instrumental in getting other insurance companies to cover Neocate also. You see, the word got out and I was then on three different television stations and in our local newspaper. While I didn't list the insurance companies who didn't cover Neocate, it was still bad publicity for them.The insurance companies ultimately said they wished to have a statewide agreement instead of a mandate (law). So, the days ticked by and our group sent heartfelt emails again to our legislature. The word began to spread like wildfire! People without children even knew what Neocate was! It was such an exciting time.
Day after day, Representative Schlekeway would call with updates about insurance companies.Those that agreed would send him an agreement that the state of South Dakota would then keep on file.
The Medical Insurance Companies Jumped on Board with Our Efforts
We now have the top six South Dakota insurance companies covering Neocate. Two of them covered it immediately. One of them won't begin until January of 2011.Three of them will begin coverage on July1, 2010. We were a bit disappointed about the delay of coverage, but there has to be a start date. Representative Schlekeway is now contacting the last two insurance companies in SD who don't cover Neocate. We are hopeful they will begin coverage also. The deadline for filing a bill has come and gone so that leverage is gone, but we have the other insurance companies doing the right thing.
In the beginning I set out to get coverage for my family. When our insurance company agreed to cover our Neocate, I could have stopped and let our group plead to their own cases to their insurance companies with Representative Schelekeway. But, I was too involved with these other families and little children.
I was asked if I would do it again. It was a lot of work, but the work I did was for our little South Dakota children who can't stand up for themselves. I have to give most of the credit to Representative Schlekeway. Without his contacts and passion for our issue, we wouldn't have gotten to first base. (For years I wrote letters and was denied.)
My Inspiration is Helping Out Little People
It is such a wonderful feeling knowing that our little people will have the insurance coverage they need! May those of you who live in a state where Neocate is not covered, be bold and stand upto your insurance companies. Find a state senator or representative who will help you contact insurance companies and learn the lingo. Start by gathering names of food allergy families. Contact a senator or representative who will guide you and plead your case. You can do it!
I hope the following Bible passages will inspire you like they inspired me. Our pursuit in South Dakota wasn't difficult. It was a bit time-consuming on certain days. It was frustrating some days. It became my passion. In the long run, it was the most rewarding thing I have ever done.
"And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward." Matthew 10:42
"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'Matthew 25:40
We mentioned earlier this year that a group of families in South Dakota was working to get reimbursement coverage for elemental formulas like Neocate which helps kids of all ages from infants to toddlers. A step has been made in the right direction — several insurance companies in the state have signed a voluntary agreement to reimburse for amino acid-based formula.
The insurers’ agreement to reimburse families for amino acid-based formula includes the following insurance companies:
The specific conditions for which amino acid-based formulas are covered varies by plan. Be sure to check with your insurance company for details about their specific policy and when it goes into effect. Co-pays and other terms will also vary by plan.
If you want to introduce reimbursement legislation in your state, be sure to visit the Children’s MAGIC Web site and download the “Guidebook to Enacting Legislation,” which has everything you need to get started.
Most consumers today believe that a product labeled as hypoallergenic will not cause an allergic reaction, but is this really true?
Let’s start with the basics. The technical definition of “hypoallergenic” is that a product is less likely to cause an allergic reaction, or will cause fewer allergic reactions. There are few federal standards that regulate the use of this term for consumer goods. For many products, like cosmetics, the term “hypoallergenic” may be used without ANY evidence or support. Some companies will use certain tests for a product to support that it’s hypoallergenic.
For infant formulas, however, you can rest assured that the term “hypoallergenic” can ONLY be used when certain criteria are met.
What is a Hypoallergenic Infant Formula?
When it comes to infant formulas, based on calls our nutrition specialists receive on a regular basis, many people think the term hypoallergenic means the product is totally void of any and all things that could trigger an allergic reaction. The reality is a bit more complex.
For an infant formula to claim hypoallergenicity it needs to go through study in a clinical trial. The requirements have been based on recommendations by the According to the American Academy of Pediatrics (AAP). According to the AAP, a hypoallergenic infant formula must:
Be studied in a clinical trial
Be studied in patients with documented cow milk allergy
Have been shown to be tolerated by at least 90% of the patients
“Tolerated” means that the formula did not cause an allergic reaction, or that those with cow milk allergy did not have defined symptoms, such as hives, anaphylaxis, or other symptoms of a food allergy. Only infant formulas made with free amino acids – like Neocate – or extensively hydrolyzed protein, also called peptides, have met the necessary criteria in these studies and can be classified as hypoallergenic.
Other infant formulas are NOT hypoallergenic. These include formulas made with whole dairy protein, formulas made with soy protein, and formulas made with partially hydrolyzed protein. (Hydrolyzed protein comes from dairy protein, but partially hydrolyzed protein is not broken down as much as extensively hydrolyzed protein.)
Difference Between a Hydrolyzed Formula and Amino Acid-Based Formula
Hydrolyzed formulas are made using protein from dairy, but the milk proteins in those formulas have been broken down into smaller fragments. The body’s immune system may not detect the smaller protein fragments as being an allergen. In some patients with a cow milk allergy, the body still reacts to the protein fragments in extensively hydrolyzed formula, resulting in allergic reactions.
Amino acid-based formulas, which used to be called elemental formulas, use only amino acids as the source of protein. Amino acids are the building blocks of protein, and are too small for the body to recognize as being foreign. They are the least allergenic form of protein.
To help you visualize the difference between these two types of formulas, picture a pearl necklace. In this example our necklace represents the strand of amino acids that make a protein. If you take the necklace and break it into smaller length strands where several pearls are connected, this would look like the peptides used in partially-hydrolyzed formulas. Even shorter strands of a few pearls will look like the smaller peptides used in an extensively hydrolyzed formula.
If you start with individual pearls, then you have a visual example of an amino acid-based formula. In an amino acid-based formula like Neocate, none of the amino acids are attached to each other. In Neocate, the amino acids are NOT derived from dairy protein. The amino acids in Neocate are synthetic, meaning they’re not derived from meat. Most of them are made from plant sugars, and some are completely synthetic.
Here’s another way to look at infant formulas and their potential for triggering an allergic reaction:
Can a Child React to a Hypoallergenic Infant Formula?
It is possible for a child with food allergies react to formulas made with hydrolyzed protein, or peptides. Amino acid-based formulas, on the other hand, are the least allergenic type of formula, meaning they’re least likely to cause a food allergy reaction.
While two types of infant formulas can claim to be hypoallergenic, based on the information above you can see that the term alone doesn’t guarantee that there will NOT be an allergic reaction. It’s important to look at your child’s individual case and discuss with your healthcare professional the type of hypoallergenic formula – amino acid-based or extensively hydrolyzed - that would best fit your needs.
Here are some additional resources that can be helpful if you are currently evaluating various formula types
Making sure your little one is getting the nutrition he/she needs is critical - especially when dealing with food allergies and GI issues. As your baby grows, nutritional needs change and different types of diets are required. Knowing what the different stages are is key so you can make sure your baby is happy and healthy.
If you’re breastfeeding a baby with allergies, be sure to:
Eat a healthy, 2,500 –2,800 calorie diet of fruits, vegetables and plenty of protein.
Check with your physician to see if you should be taking any supplements. Some women have difficulty getting essential vitamins like calcium, folic acid and zinc while breastfeeding.
Remove all allergens from your diet. Usually a milk protein is the culprit, so you you’ll need to remove all dairy products but watch out for items with hidden dairy like salad dressing and nutrition bars.
If you choose to feed your baby formula:
Consider an elemental formula like Neocate that is made up of individual amino acids and is easier for babies with allergies to digest.
Think about choosing a formula that contains DHA and ARA, two fatty acids that are important for infant eye and brain development (both naturally present in breast milk).
This is when you want to start introducing your baby to solid foods.
Start adding texture to your baby’s diet with an elemental semi-solid like Neocate Nutra. Mixed with water, it has a similar consistency to pudding. Once your baby begins to get used to the texture of the Nutra and to eating from a spoon, you can introduce pureed or strained fruits and vegetables like banana and carrots. You may want to even mix them into the Nutra. Definitely consult with the doctor about how to safely test new foods if your child has allergies.
Don’t wait too late to introduce solids. If you do, it can be difficult for your child to learn important oral skills like chewing.
By this time, your baby will probably have a few teeth and be ready to take on crunchier foods.
Cereals and raw fruits and vegetables cut into very small pieces are good at this age. But, again consult with the doctor about safely testing new foods.
The nutrient profile at this age is different than for an infant. If your little one is still on an amino acid-based formula, be sure to switch to one that is specifically formulated for kids over the age of one.
Hope you find these tips helpful. What have you done to make sure your kids are getting the right nutrition for their age?
I like to chat with other moms on BabyCenter and lately I’ve seen a lot of questions from parents having to do with baby poop (or the lack of it!). It’s also a popular topic among the calls we get on the Neocate help line. No wonder - when babies have milk allergies and other GI issues, there’s can be a lot going on in that diaper. Every child is different, but here are some general guidelines that we thought might help. Remember, if you have any concerns, it is always best to check in with your doctors.
What to expect if you are:
Breastfeeding: If you are breastfeeding your baby, a mustard yellow color is common and it may be seedy and runny. You can also expect to be changing a lot of diapers, because babies usually poop a lot before they reach the one month mark!
Formula feeding: Formula fed babies usually have firmer poops, with a peanut butter-like consistency. Normal colors range from brown to green to yellow.
It might be an allergic/GI condition if you see:
Mucus – This looks like what comes out of your nose and is sticky when you open the diaper. A little bit can be normal, but if you see a lot and for an extended period of time, it can be a sign of a food allergy.
Diarrhea – If your baby is having runnier than normal poops 2-4 times per day for more than 5 days, this is a sign that something is wrong.
Blood – Red or black poops can both be a sign of blood in the digestive tract and are often signs of an allergy or uncontrolled reflux.
Note: Remember that some babies’ milk protein allergy exhibits itself in other ways, like eczema, extreme fussiness or reflux. A baby with a milk protein allergy might have just one of these symptoms or any combination of them. If you see any of the symptoms, talk with your child’s pediatrician.
What to expect from an elemental formula (like Neocate):
When babies first start on an elemental diet such as Neocate, it may take up to 2-3 weeks for their systems to adjust and have consistent stools. If they seem to be constipated, massaging your baby's belly or moving their legs around can help get things moving.
Also, Neocate babies often have poops that can change in consistency and color when they first start on the formula. This is because Neocate is a low residue formula. Low residue formulas lower the number of bacteria in the gut leading to reduced breakdown of bile. More bile is present in the poop making it darker in color.
Great news for Texans! This weekend Governor Rick Perry signed into law a bill that will require private insurance companies to cover amino acid-based elemental formulas like Neocate, regardless of whether the formula is taken orally or via a feeding tube.
Insurance reimbursement is required for the following conditions:
IgE and non IgE-mediated allergies to multiple food proteins (i.e. milk protein allergy);
Impaired absorption of nutrients caused by disorders affecting the absorptive surface, functional length, and motility of the gastrointestinal tract.
The law applies to health plans that are delivered or renewed after January 1, 2010. To read the entire bill click here.
Other states with reimbursement legislation include Arizona, Connecticut, Illinois, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey and New York. However, each states laws are slightly different – To view a copy of a specific state's legislation click here.
This is great news for families in Texas and I expect it will provide some much-needed economic relief. I encourage you to share the news with others. Some ideas for spreading the word:
Here’s an interesting article from thePotomac Gazette about a Maryland food allergy family that nicely highlights the need for better diagnosis of infant milk allergies.
However, I wish the reporter would have explained further hypoallergenic formulas and the differences between hydrolysate formulas and elemental formulas. In the article, Victoria Goldberg, mother of two boys who were allergic to milk as babies, mentions that the hypoallergenic formula she gave her oldest still caused a reaction. That’s likely because it was a hypoallergenic hydrolysate.
Hydrolysate formulas (i.e. Nutramigen, Alimentum) contain protein chains that are partially broken down, which makes it easier to digest than typical baby formula. However, sometimes that’s not enough. Some babies need elemental formula (i.e. Neocate) that contain individual amino acids (the building blocks of protein) instead of protein chains.
I think understanding this distinction is key – especially since it can mean the difference between a sick, miserable baby and a happy, healthy baby.
Wonderful news for allergy parents in the state of Maine. I just found out that, according to a bill signed by Governor Baldacci on April 11, 2008, insurance coverage is now required for amino acid-based formula like Neocate in Maine!
“An Act To Protect the Health of Infants” requires health insurance carriers doing business in the state of Maine to provide coverage for all medically necessary infant formula in both individual and group policies, contracts and certificates.
The bill applies to all health insurance policies, contracts and certificates enacted on or after January 1, 2008 in Maine.
Under the bill, insurance coverage for amino-acid based elemental infant formula is required for children 2 years of age and under. This is definitely a step in the right direction, but of course we would like all children who need an AAB formula to be covered.
And for ways to get involved with your states legislation, click here.
Currently, there are 9 other states with similar legislation, including Arizona, Connecticut, Illinois, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey and New York. As I’ve said before, hopefully many other states will follow with similar legislation.
From time to time, clinicians and parents of children with allergies ask me if I’ve ever tried the Neocate formulas. We here at Nutricia have certainly tasted them all, but tasting and consuming are not the same. After lots of questions from parents about what their little one is feeling and whether or not it’s normal, and given my indiscriminate palate, I decided it was time to really give Neocate a try.
My plan? To go on a nothing-but-Neocate diet for two days. What, exactly, would be allowed? Neocate: specifically any of the Neocate products and a few allergen-free artificial flavors. I decided I could still have plain tea (lack of caffeine could be a real problem for me!). I also decided that, given my usual fiber intake from foods, I would also supplement my all-Neocate diet with prebiotic fiber.
Some folks might say that adding fiber is cheating. However, we already include fiber in Neocate Junior with Prebiotics. I took the guidance that I (as a Registered Dietitian) would give anyone: to avoid a sudden and drastic change in fiber intake, up or down. I was able to find a fiber supplement derived from inulin. Inulin is the plant source of the prebiotic fiber that’s included in Neocate Junior with Prebiotics, so this would be similar. And the use of other allergen-free artificial flavors? I figured that was okay too, because dietitians who work with children and adults with eosinophilic esophagitis (EoE) allow these when the patients follow an amino acid-based (or "elemental") diet.
What wasn’t allowed? Anything else!
With these rules in mind, I used my approximate calorie needs to design a “meal plan” and dove right in.
Dessert: Neocate Junior with Prebiotics, Unflavored + artficial 'cookies ‘n cream' flavor
Day 1 Experience:
Day 1 started with Neocate Infant DHA/ARA. Does this taste like standard infant formula or milk? Nope. Because Neocate products have amino acids instead of whole protein, Neocate Infant DHA/ARA has a different taste and a thinner consistency (it's more watery). To me it has an herbal undertone, which isn’t so bad, and is something most infants either don’t notice or get used to after a day or two.
Smaller amounts were fine, but a full 350 calories of plain Neocate Infant DHA/ARA was a bit much, even for me! By my last “meal” of Neocate Infant DHA/ARA at lunch I decided to try adding some artficial lemon-lime flavor. So far, so good. I was surprised that I wasn’t ravenous later in the day – I had my doubts that an all-liquid diet would keep me satisfied, but it really did! I managed to go to bed without any food cravings that day. No stomachaches and nothing out of the ordinary. Day one, done!
Day 2 Menu:
Morning Snack: Neocate E028 Splash, Tropical Fruit
Day 2 started with some definite hunger, but the morning snack took care of that. When I arrived at work I found a donut on my desk from a coworker – enter the cravings for solid food! It was definitely tough to avoid the snacks around the office that day, but I made it through. The toughest part was probably dinner time. I usually make dinner in our house, so cooking and not eating the food was difficult. (No french fries?!?)
By the end of the day all of the different flavors began to taste pretty similar to me, probably because I tried so many flavor mash-ups. I will say that I definitely found the Neocate E028 Splash an easy option. It seems silly, but it was so easy to grab a Splash instead of having to prepare a meal. I really see how convenient this can be for kids and families on the go, not to mention adults like me!
All things considered, the all-Neocate diet wasn’t nearly as difficult as I thought, and in some ways it actually made life easier. (I'm terrible at meal-planning, which makes for some very last-minute dinners!) I really appreciated having all of the different flavor options and the ease of Splash in a ready-to-go format. That said, a third day might have gotten a little routine, so I have a lot of respect for the children and adults who have to stay on an amino acid-based diet for a long period of time. It has to be especially those who have had “real” food, know what it tastes like, and must give it up for a period of time.
And the question many parents would like to ask: How did I feel after two days of Neocate? Pretty normal, actually! There are rumors that amino acid-based diets cause constipation, but that's not true. My stomach felt a bit more “active” at times, but I never felt queasy, had diarrhea or constipation, or really felt any different than I usually do. I didn’t have any big swings in hunger or fullness, and it was nice not worrying about whether or not I was getting a balanced diet: Neocate took care of that for me. For parents of children who are going from a solid food diet to Neocate (such as those with EoE who are starting an elimination diet) you may want to check with your child’s healthcare team about using Neocate Junior with Prebiotics, which has fiber to help maintain gut health.
The first eight months of Sean’s life were grueling. He experienced the discomfort and pain of vomiting up to three times a day, unable to tolerate his formula. Six months of very little weight gain left Sean feeling weak, while his gastroesophageal reflux condition fuelled his asthma symptoms.
At nine months old Sean was diagnosed with failure to thrive; a description given to children whose current weight or rate of weight gain is significantly below that of other children of similar age and sex.
“We didn’t understand why he was vomiting so often and his lack of weight gain,” said Rebecca Sparks, Sean’s mother. “It was heartbreaking on us as his parents to see him go through that all, we felt helpless.”
To combat Sean’s persistent vomiting, his parents tried Zantac and Prevacid, which seemed to soothe his symptoms for some time, but they ultimately returned.
Since his symptoms kept reoccurring, Sean’s pediatrician referred his parents to a gastroenterologist, who tested for allergies, cystic fibrosis and eosinophilic esophagitis. Sean tested negative, increasing his parents concerns. With little options left, Sean’s doctors recommended a surgery, nissen fundoplication, which treats gastroesophageal reflux by stitching the upper part of the stomach around the lower end of the esophagus, reinforcing the closing function.
In an attempt to exhaust all other options, especially surgery, Rebecca turned to Neocate Junior. After a month and a half, Sean only vomited a total of three times compared to three times a day prior to Neocate.
“I definitely wish we had switched to Neocate sooner,” says Rebecca. “Sean is gaining weight and drinking more formula. He was averaging 20 ounces per day and now he chows down 30!”
Neocate has improved Sean’s life and offered him an alternative to surgery and for that his parents are grateful.
“Sean doesn’t have to experience the pain of vomiting so often and can tolerate all his formula,” says Rebecca. “Sean has always tried to be a happy camper despite his symptoms, but with Neocate, he can be happy and healthy."
Also, if you enjoy receiving information from Neocate via video please let us know by posting a comment on our YouTube channel. We are continuing to work on more videos and we would love to hear from you!
So, what kind of other videos would you like to see on our channel? Is the mixing Neocate video helpful?
Whether your child is out of school for summer break or you are getting ready to visit family for the holidays, we all get an urge to take a break from our regular yearly routine and go out in the world exploring.
There is always a lot to consider when planning a trip. Where will you go, how will you get there, who will join you in your adventure? Traveling with a food allergy adds yet another caveat to the plan: What will you eat and how much Neocate will you need to bring?
Some parents wonder about the best way to bring Neocate along on their vacation, whether it’s a road trip or flight. Many parents are concerned about the high temperatures during summer months and whether this will be a problem when transporting Neocate. We also get questions about obtaining Neocate in other countries.
Let us here help you get ready, set and go for a successful trip planning.
Planning is the key to success in so many areas of life and planning for travel is no exception. Lodging and transportation plans are always on top of the list. For those of us in the food allergy community, food and formula plans are also a top priority.
You will want to be ready for your trip to know restaurants in the area that can accommodate your food allergy needs. A good place to start is by reviewing our recent blog on Food Allergies and Dining Out to help you prepare for your travels.
You will also want to calculate how much Neocate you will need for your trip, and this is not the time to be conservative. When calculating the amount of formula you will need for the entire trip, it’s best add extra for any unexpected delays you might encounter. For example, we once heard from a family that was stuck in another country with their flight being delayed by couple of days. Without a buffer of formula, they had to look for a local pharmacy to get a refill. Save yourself the stress and headaches by planning.
Example how to calculate how much Neocate you might need on your trip:
First start with the number of ounces of formula your baby drinks each day. Multiply this by the number of days you will be gone, including the travel days. For example, if you’ll be away for seven days total, including travel days, and your baby drinks 20 fl oz per day, you’ll need 140 fl oz over the course of the trip. Each can of Neocate Syneo yields about 95 fluid ounces (at the standard dilution of 20 calories per ounce), so you divide 140 by 95 and round up. This example baby would need about two cans of formula for the trip. Once you know the number of cans you will need, I recommend packing an extra can just in case travel plans change unexpectedly.
If you are like me and take a bit of time to return to your usual schedule after a vacation, then you may also want to consider how much Neocate you will need to carry you through the following week or even 2 weeks after your vacation as well.
Now that you know how much Neocate you will need for your trip, time to plan how you will travel with your formula. The decision to make at this stage is, should I pack it or ship it?
If your travel plans make it possible, you can pre-order Neocate ahead of time and have it shipped to your desired destination. Did you know if you order directly from our website orders over $25 get free ground shipping? View available Neocate products.
Shipping product ahead of your arrival may help lighten the load of what you will need to pack and carry with you, which can be especially helpful when traveling by plane. If you decide to go with this route, consider packing some emergency supplies with you just in case. Going this route will also require for you to call your destination to alert them that you are expecting a package, ask how it should be addressed, and provide any other instructions that are needed for storage.
If you decide to pack and travel with your Neocate products, make sure you check the Transportation Security Administration (TSA) guidelines for what you can carry on board and through security and onto your flight. TSA has regulations about flying with liquids for you or your family member. Formula, breast milk and juice for infants or toddlers are permitted to be brought on board the aircraft. Older individuals (older child, teen or adult) may also travel with Neocate.
Travelers must tell the TSA officer at the beginning of the screening process that they wish to bring formula, breast milk and juice in excess of 3.4 ounces in their carry-on bag. (These liquids do not have to fit within a quart-sized bag like other liquids.) The formula, breast milk and juice are typically screened by X-ray, and any of these liquids in excess of 3.4 ounces will receive additional screening. Ice packs and other accessories required to cool formula, breast milk and juice are also permitted through the screening checkpoint but may be subject to additional screening.
Some Neocate families have told us that they’ve met TSA officers who aren’t used to seeing an older individual requiring a medical food like Neocate before. If you or your loved one is older, it may also help to bring a doctor’s note explaining that Neocate is medically necessary.
TSA recommends that if you plan to travel with large quantities of medically necessary liquids you should coordinate your screening by contacting a Passenger Support Specialist prior to your flight. Since guidelines for traveling can change at any time, it's best to review TSA guidelines for traveling with medications including liquids and TSA guideline for traveling with children to have a clear understanding of traveling with breast milk and formula such as Neocate.
When packing, make sure to bring enough formula for the flight in your carry-on bags and some extra just in case your checked bags get lost. Neocate formulas can be prepared ahead of time and kept in a refrigerator for up to 24 hours. It can be stored at room temperature for up to 4 hours. So if you have a long flight, consider bringing a little cooler for your bottles. Some parents prefer to not bring all of the Neocate in their checked bags and instead ship most of it to wherever they are heading ahead of time. If you do this, make sure to confirm that the product has arrived before you leave for the trip so that you don’t arrive to find that the package did not get to your destination.
Are any extended family members or other friends included in your travel plans? If so, don’t hesitate to enlist their help in packing the Neocate you will need to keep on hand while traveling. No need for you to carry your Neocate all by yourself if other family is available and willing to lend a hand, or even a suitcase!
Whether traveling by plane, train, car, bus or boat you want to pack some Neocate with you to ensure you have what you need with extra just in case.
Want more tipcs for packing? Here are some tips and a check list of items you will want to include:
Epinephrine & Medications - Make sure to keep medications and your epinephrine auto-injector with you in case they are needed during transit. This will also ensure that, should something either delay or inhibit your luggage from meeting you at your destination, you have medications on hand. If your child has epinephrine, make sure it isn’t expired and consider packing an extra just in case. Have it handy at all times and get an insulated carrying case to prevent it from getting too hot or cold.
Allergy Cards - Having allergy cards ready for those who might want or need them such as airline staff, restaurant staff, or even family members can help provide a clear outline of the types of foods that will cause your little one to have a reaction. Our Neocate Footsteps App can help you create an allergy card if needed.
Allergy-friendly snacks - Snacks are always a good idea when you travel as you never know when a delay or change in plans may happen and you will need a snack. Traveling with food allergies makes this even more important as you may not have access to items that are appropriate for you. Check out the TSA Guidelines for Food allowed if you plan to fly for the most up-to-date information on regulations.
Games, reading material, or entertainment. (Parenting hack: One of the mom’s on our team likes to wrap old toys and games in gift wrap paper to make her toddler feel like they are getting a present)
Wallet, purse, cash, ATM cards, any other financial documents you will need
All travel documents including your ID, passport, and IDs for your children if needed
Printouts of all reservations and itinerary (for when you can’t find that Wi-Fi connection)
Craving additional prep tips? We have ideas from friends who can help. Get more tips by reading a firsthand account from a mom Gina Clowes, founder of AllergyMoms.com, who has traveled with food allergies herself. Read her Food Allergy Travel Tips.
You can also view the following free webinar from Kids with Food Allergies featuring guest speakers Laurel Francoeur, JD, and Matthew Greenhawt, MD, MSc. The presentation covers legal restrictions, disability issues, TSA regulations, peanut dust and inhalation studies, and how to prevent allergic reactions on airplanes.
Finally, time to get out and enjoy your trip. You are all set, prepared for the unexpected, and ready to enjoy time away with your loved ones. Should you find that you need more Neocate along the way, use this Find a Pharmacy tool from our website to help you located the Neocate you need, also available in the Neocate Footsteps App. Please call the pharmacies that are listed in your search to be sure they have Neocate in stock, and especially the Neocate option you are looking for particularly. If not, keep in mind that Neocate products can be special ordered with doctor’s recommendation.
Keep in mind that all unopened Neocate should be stored at room temperature in a cool dry place and avoid extreme temperatures. Once Neocate powder has been prepared or a Neocate Splash drink box has been opened, it should be stored in the refrigerator and used within 24 hours or discarded. Prepared Neocate or opened drink boxes are safe at room temperature for up to 4 hours, at which time any unused formula should be discarded. Once your loved one starts to drink their Neocate from a bottle, cup, or drink box it should be consumed or discarded within 1 hour.
In case you are concerned about the safety of your Neocate while in transit, perhaps this will help put your mind at ease for your pending travel. Short term exposure to temperature such as those you might encounter on your travels, like time in the airplane cargo hold or the warm summer temperature in your car, do not pose a risk to product quality or stability. Those extreme temperatures do not become a concern unless a product is left at those temperatures for an extended period of time, for example several days or weeks.
Lastly, if your travel plans include flying out of the country you might be wondering whether Neocate can be purchased in other countries. The short answer is "maybe." Neocate is sold around the world, however, it is not available everywhere, not all products are available in all countries that have Neocate, and every country has different processes for obtaining it (through a doctor, pharmacy, mail, etc). You should not assume that it is easily obtainable and in most cases, it is easiest to just bring along enough formula for your trip. If you are going to another country for an extended amount of time and don’t think you can bring a big enough supply with you, call Nutricia’s global office or the office of the country where you are heading to see if you can purchase Neocate locally. If you can arrange this, be sure to bring as much formula as possible with you just in case there is a delay in obtaining the formula locally once you arrive.
What other Neocate questions or concerns do you have when you prepare for your family for Summer travel? How do you prepare to travel with Neocate?
Share your stories, tips for others, or even pictures in the comments below.
Earlier in the year Karen Adams shared her Neocate YouTube videos as well as her son Israel’s story as a guest blogger on our blog. As a reminder, for months Israel would scream, cry and vomit for hours on end. His parents tried everything, but he didn't find relief until they switched him to Neocate.
Recently Karen recorded another video about Israel and his first birthday. He is still allergic to milk, but they’ve transitioned to Neocate Junior and it is helping him continue to grow and thrive!
We’ve written a few blogs in the past relating to fiber and prebiotics. One of them discussed what fiber is, and why it’s good for us and another touched on prebiotic fiber. In a previous blog that I wrote, I mentioned that I decided to supplement my all-Neocate diet with fiber. If you feel your child might benefit from a fiber supplement, we have some tips to help you choose the right one!
Know what your child needs
Before exploring the options, make sure to check with your child’s health care team to be sure that additional fiber is needed. As we’ve mentioned in previous blog posts, fiber can help to improve gut health. For many folks, adding fiber can mean being more “regular,” which would be a decrease in constipation, diarrhea, or both. Your child’s health care team will consider the symptoms your child has, his or her medical condition, the amount of fiber he or she is getting, and whether or not more fiber might be helpful. Nutricia already has the only amino acid-based formula with fiber (Neocate Junior with Prebiotics), which can help meet your little one’s fiber needs.
Know what’s available
Fiber comes in MANY different forms, and is found in a variety of foods. The best sources of dietary fiber are fruits, vegetables, beans (or “legumes”), nuts, and whole grains. However, many children on an elemental diet are limited in one or more of these food groups. They may be especially limited in processed foods, or foods that might include fiber but also have an allergen (such as whole grain bread, which can often have dairy or egg ingredients). Again, be sure to check with the health care team to see if the foods your child is eating meet his or her fiber needs.
While there is a lot of variety in the types of fiber in whole foods, the types of supplemental fiber tend to be an isolated single type of fiber. For instance, many fiber supplements are bran-based. They use the outer husk of a grain to provide both soluble and insoluble fiber. Since insoluble fiber tends to speed digestion along, it may not be the best choice.
Another common form of fiber supplement is an isolated fiber, either soluble or insoluble fiber. Soluble fiber dissolves easily, so it mixes well into Neocate Junior, E028 Splash, or Neocate Nutra. It can help slow movement through the gut, and can help add bulk to stool. This is the type of fiber we include in Neocate Junior with Prebiotics. Many of these isolated fiber supplements are inulin, which is derived from the root of the chicory plant, which poses low risk for most children with allergies.
Know what questions to ask
One of the best questions to ask is what the source of the fiber is. For children with a wheat allergy, a fiber source which is derived from wheat, barley, rye, and possibly oat might not be appropriate. For those, a parent should look for a “gluten-free” claim or contact the company for more information.
Some fiber supplements carry the label “non-allergenic” or “hypoallergenic.” It’s always best to contact the company and ask them exactly what they mean with these terms. Also be sure to ask what the source of the fiber is and whether or not the product poses any risks for your little one’s specific allergies or sensitivities.
If your child’s health care team recommends supplementing fiber, make sure to ask how much to add and how to start using it. It’s best to introduce more fiber to the diet slowly and increase it gradually instead of adding the full dose all at once. This gives the body time to adjust to the change. Fiber should also be spread out throughout the day.
Do you have questions about choosing the right fiber supplement? Let us know in the “Comments” section below.
As a newborn baby girl, Abbigail endured sleepless nights as she fussed and squirmed in search of relief. At 10 weeks old she only weighed 8 pounds and struggled to gain weight.
No matter what position her father put her in, she was uncomfortable and in pain. Her constant vomiting, gassiness and weight loss was fueled by her food allergies and gastroesophageal reflux; a condition in which food leaks backwards from the stomach into the esophagus, causing severe pain and damage.
“Hearing my child cry was really hard to handle because I knew she was in pain and there was little I could do to help her,” says Robert, Abbigail’s father. “The only temporary solution we ever found was arching her back to achieve some kind of relief."
Abbigail’s parents attempted to bring her relief by using numerous formulas and anti-reflux medications, but nothing helped.
With worsening symptoms, Abbigail’s parents sought medical help for her at the Oklahoma City Children’s Hospital. Upon being admitted to the children’s hospital Abbigail underwent 10 days of testing and ultrasounds. Finally, on day seven, doctors turned to Neocate Infant DHA and ARAin hopes to relieve Abbigail of her intolerable pain. Within 24 hours she showed signs of improvement.
“Abbigail was a totally new baby after Neocate,” says Robert. “She started gaining weight, she was healthy and most importantly she was happy. It was a total transformation.”
Neocate has allowed Abbigail to lead a healthy life free of pain and full of joy. With her new lifestyle, she is able to play with her infant toys and is learning new tricks.
“Abbigail is no longer in pain searching for relief and she is able to sleep in her crib at last,” says Robert. “What Neocate did for our baby is incredible and has improved her quality of life and ours!”
Q: My child has multiple food allergies including milk, eggs, and soy. With such a restricted diet, I am worried about his nutrition. Is he getting enough nutrients in his diet?
A: As we know, there is no cure for food allergies. The only way to manage them is by eliminating the specific allergen from the diet. Most food-allergic children are at an increased risk of nutritional deficiencies especially when they have allergies to commonly used allergens such as milk, soy, eggs, and wheat. Below is a table that highlights the important nutrients often found in these top allergens. These nutrients may be lacking in a child’s diet if they are avoiding these foods due to allergies.
Multiple studies have also found that children allergic to milk also have higher risk of poor bone growth and tend to be shorter in height versus children without food allergies.1,2 Children eliminating just milk from their diets have been shown to be lacking in vitamin D, calcium, and protein.1,3-4 The nutritional deficiency risk increases as the number of food allergies increase. These kiddos are at risk for malnutrition unless supplementation replaces the nutrients found in the offending allergen.1
Age-appropriate nutritional supplementation is vital for these children. A hypoallergenic supplement is highly recommended if the child is under two years old.5Extensively hydrolyzed and amino acid-based formulas are often used to supplement a child’s diet when food allergies are evident. Keep in mind, while extensively hydrolyzed formulas (eHFs) are considered hypoallergenic, they still use cow milk protein as seen in the ingredients (casein and whey are milk proteins). Amino acid-based products, such as Neocate, are more hypoallergenic than eHFs and are 100% free from allergens. Amino acid-based products are often used if the child does not tolerate an eHF, which can occur in 10-30% of food allergic children.6-8Registered dietitians are important in evaluating your child’s diet. They can determine what percentage of the DRIs (Daily Recommended Intakes) of each vitamin and mineral your child is receiving and if changes need to be made in order to ensure your little one is getting 100% of their DRIs. With the help of your doctor and/or registered dietitian, you can find the right hypoallergenic product that will fit your child’s nutritional and developmental needs.
1. Henriksen C et al. Nutrient intake among two-year-old children on cows’ milk-restricted diets. Acta Paediatr. 2000;89:272-278.
2. Agostoni C et al. Growth of infants with IgE-mediated cow’s milk allergy fed different formulas in the complementary feeding period. Pediatr Allergy Immunol. 2007;18:599-606.
3. Levy Y et al. Nutritional rickets in children with cows’ milk allergy: calcium deﬁciency or vitamin D deﬁciency? Pediatr Allergy Immunol. 2005;16:553.
4. Fox AT et al. Food allergy as a risk factor for nutritional rickets. Pediatr Allergy Immunol. 2004;15:566-569.
5. Fiocchi A et al. Diagnosis and Rationale for Action Against Cow’s Milk Allergy (DRACMA): a summary report. J Allergy Clin Immunol. 2010;126(6):1119-28.
6. de Boissieu D et al. Allergy to extensively hydrolyzed cow’s milk proteins in infants; safety and duration of amino acid based formula. J Pediatr. 2002;141(2):271-273.
7. Latcham F et al. A consistent pattern of minor immunodeficiency and subtle enteropathy in children with multiple food allergies. J Pediatr. 2003;143:39-47.
8. Isolauri E et al. Efficacy and safety of hydrolyzed cow milk and amino acid-derived formulas in infants with cow milk allergy. J Pediatr.1995;127 :550-557.
Crohn’s Disease (CD) is a type inflammatory bowel disease. It may occur in any part of the GI tract but usually it affects the small intestine and/or the colon. Individuals with CD have periods of improvements and periods of “flare ups” when symptoms present. Symptoms may include abdominal pain, diarrhea, rectal bleeding, fatigue, weight loss and in children, growth delay, etc.
CD is thought to be caused by an abnormal immune system. One theory is that the immune system mistakes its own friendly gut bacteria and foods traveling through the GI tract as pathogens and triggers an immune reaction to attack them. Treatment usually is with drugs (such as steroids and immune system suppressors) which are used to manage symptoms and to prolong the periods between flare ups as long as possible.
Nutritional Management of Crohn’s Disease:
Nutrition is an important factor for patients with CD. During flare ups, inflammation of the GI tract may disrupt the normal absorption of nutrients. This can cause serious nutrient deficiencies so it’s important to assess the need for nutritional supplements. During periods of severe symptoms, intestines may be unable to absorb enough nutrition to sustain life, so the physician may prescribe an alternate way to provide nutrition, such as temporary intravenous nutrition or enteral nutrition. With enteral nutrition, the patients may consume an elemental formula, a nutritionally-complete liquid formula that provides all nutrients in the simplest form which makes it easy for the GI tract to absorb. This allows the GI tract to rest and repair itself, while ensuring the patient is still receiving adequate nutrition.
Crohn’s Disease in Children:
Long-term steroid use can have serious side-effects. In children, the growth impairment associated with steroid use is a serious concern, especially combined with the fact children with CD are also more prone to consume inadequate calories. Some families choose to treat flare-ups and prolong remissions using nutritional management rather than steroids. An elemental diet or even a half elemental diet can help manage flare ups, prolong remissions and ensure proper nutrition & growth for children with CD. E028 Splash and Neocate Junior may be useful for children with CD who are following dietary therapies.
If you are searching for more information on the use of diet to manage CD, many families find the book “Beat Crohn’s” helpful.
If you’re used to preparing powdered Neocate formula, you might be wondering if there is an easier way. It’s tough enough getting yourself and/or your family dressed in the morning, much less having to measure out and prepare powdered formula for daycare or school or work. Fortunately another option is E028 Splash!
What is E028 Splash?
E028 Splash, or just “Splash” for short, is part of the Neocate line of hypoallergenic formulas. The “E028” is a unique product code that stuck! The "E" stood for "elemental" and the "28" represents the 28 essential vitamins and minerals added. Splash is technically a “medical food,” which falls somewhere in the middle of a food, a drug, and a supplement. Orange-Pineapple Splash has been available in the US since 1995, and in 2006 we introduced 2 new flavors: Tropical Fruit and Grape.
Splash, just like Neocate Junior, was designed for individuals over a year old and contains some of all of the nutrients growing bodies need, like carbohydrates, fats, proteins, vitamins, and minerals. Splash is used by children, teens, and adults. Splash is unique because the protein source is free amino acids, which are safe for kids with food allergies and other medical needs that require an elemental diet. It’s also gluten-free and casein-free.
What makes Splash so great?
The number one reason families love Splash is because it’s so convenient. Splash is the only ready-to-feed, hypoallergenic, amino acid-based formula there is! It goes into a backpack, purse or briefcase just as easily as any other drink box. No more measuring powder, measuring water, and shaking! Not only is this convenient for daycare, day trips, work or school, but it also takes the guesswork out of the equation for babysitters, family, and other parents if you have a child on Neocate that visits on a play date.
Children love Splash for a number of reasons. Severe allergies may mean they need a special formula, but who says it has to LOOK like a special formula? Not us! Splash is packaged to look like other juice drinks, so allergic kids don’t have to feel “different” from everyone else. For some, the novelty of getting to drink their formula through a straw instead of from a cup can make a world of difference. And don’t tell your little one that we said this, but the drink box keeps the distinct smell of formula wrapped up. And to top it all off, Splash comes in 3 great flavors, which can help anyone stick to an elemental diet by adding variety.
Splash has been a blessing for so many families that it has even appeared in a few news stories: here’s a video of Splash helping Matthew Bernard!
The research team looked at over 100 patients with esophagitis; some had EoE, while others had chronic esophagitis, and compared them to patients who had no esophagitis. On average, this was about 15 years after the patients developed esophagitis. EoE research was in its early stages back then, and many patients went undiagnosed or were misdiagnosed. The participants answered questions about their symptoms and quality of life. The researchers then compared the results of each of the groups to see what differences really stood out.
Patients with EoE reported a lower quality of life and experienced more trouble swallowing and had food become stuck in their esophagus more often. Those patients with higher eosinophil counts in childhood had more trouble swallowing as adults. Also, patients with a diagnosed food allergy were more likely to have trouble swallowing and to have food become stuck in their esophagus.
The Bottom Line
As the researchers concluded, EoE “is associated with reduced quality of life and persistent symptoms 15 years after presentation.” They also noted that both increased eosinophil counts and the presence of food allergy in childhood increase the rate of trouble swallowing in young adulthood. It doesn’t sound very positive, but it’s what many of us expected: there is a strong link between food allergies and symptoms among patients with EoE, and high eosinophil levels can have a lasting impact.
What Can We Take Away from This?
Sure, the results and conclusion don’t sound great at first, but there are a few things to keep in mind. For one, a HUGE amount of research has been conducted on EoE in the last 15 years, and we’ve learned a lot! Patients who had EoE 15 years ago had a much different experience than patients with EoE today have. For instance, the way that EoE is diagnosed and treated has improved in that time. Also, many more of today’s health care teams can recognize, diagnose, and treat EoE, which is more widely known. And many teams also include allergy testing as part of the care process for EoE.
There are also options for managing EoE that are now in wide use. For instance, elimination diets and elemental diets (which we’ll blog about in a few weeks – stay tuned) have come a long way. Elemental diets (or amino acid-based formulas) can be especially helpful in getting EoE under control and are useful in diagnostic phases. These formulas can help improve trouble swallowing when EoE isn’t under control, which can mean better outcomes. They can also provide key nutrients when added to a very limited diet.
Children on elemental diets have lots of options these days in the Neocate family of products. We have Neocate Junior, which is available in several flavors. We also have E028 Splash, which not only comes in multiple flavors, but is also in drink box form, so it’s just as ready-to-go as your child! And for children who miss solid textures on an elemental diet, Neocate Nutra can provide a change of scenery, especially prepared in one of our recipes.
What did you learn from the new research that was published in June?
We’re excited to introduce you to our newest product — Neocate® Junior with Prebiotics, Vanilla! This is the first and only flavored amino acid-based medical food with soluble prebiotic fiber for children with GI conditions. Neocate® Junior with Prebiotics, Vanilla will help fight flavor fatigue and provide digestive support for a balanced gut for manychildren who suffer from milk or soy allergies, multiple food allergies or allergy-induced gastrointestinal disorders.
Children who use Neocate Junior should be under the care of a healthcare professional. Families with questions about Neocate Junior with Prebiotics, Vanilla or the whole Neocate family of nutritionally complete amino acid-based medical foods, please visit www.Neocate.com or call the toll-free number at 1-800-365-7354, Monday through Friday, 8:30 am – 7:00 pm EST.
As a newborn boy Benjamin weighed a healthy 6 lbs. 3 oz. but within days of his birth, he began to lose weight and break out in a rash all over his body. He was terribly unhappy and inconsolable.
While Benjamin struggled to gain weight, he began to vomit every time he ate and often had diarrhea. At two and half weeks old, Benjamin’s parents took him to the emergency room where he was admitted for one month. As his symptoms worsened, doctors ran numerous tests, all of which came back inconclusive. They also tried many different formulas but nothing relieved Benjamin’s symptoms.
“Benjamin was born a healthy child and it was so hard to watch him slowly lose weight and have his symptoms continually become worse,” says Suzanne Berkovitz, Benjamin’s mother.
After a few weeks in the hospital, Benjamin was put on 10 days of bowel rest and antibiotics. Eventually doctors concluded that Benjamin had a severe milk protein allergy in addition to a soy allergy.
Neocate was slowly introduced into Benjamin’s system after his dramatic weight loss and numerous setbacks at the hospital. Benjamin’s symptoms began to improve just a few days after starting Neocate and he was discharged from the hospital once he began to gain weight.
“After everything Benjamin had been through, I was doubtful that anything could make him better but I noticed a difference in him almost immediately after starting Neocate,” says Suzanne.
At 15 weeks old, Benjamin weighs 15 pounds on his Neocate diet. His rash has disappeared and all of his symptoms have dissipated.
“Benjamin is a happy, healthy baby now. He loves to eat and we owe his success to Neocate!” says Suzanne.
Food Allergy Living is a resource for parents of children with food allergies, brought to you by Nutricia, the makers of Neocate. For more in-depth information about our purpose & authors, see our About Food Allergy Living page.