They may be best to share with your allergist, pediatric gastroenterologist, dietitian, or general pediatrician if your little one has been diagnosed with or is thought to have CMA.
Keep in mind it is a large document (~100 pages...whoa!).It really does a great job at providing recommendations on the proper diagnostic tools needed for an accurate CMA diagnosis (as 50 - 90% of food allergy diagnoses are not actually food allergies). The WAO also provides information on amino acid-based formulas (AABF), such as Neocate, and where the use of AAB products is best in the management plan of patients (e.g. Eosinophilic Esophagitis patients).
Hopefully this will help you and your child’s doctor in understanding the proper guidelines in accurately diagnosing and managing your child’s CMA. Let us know what you think of it. Is this useful information for you or your child’s doctor?
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.
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 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
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 part 1 of her 2 part story.
The Initial Food Allergy Diagnosis
You have just left the doctor's office with your infant in your arms. Now you have those doctor's words circling in your mind. "Your child has multiple food allergies and will need a special amino acid-based formula like Neocate. You can't feed your child anything that has milk, soy, oats, citrus, wheat or nuts in it. Start reading labels with a microscope. "If you are lucky, you are only avoiding two or three foods. For most children with protein intolerances, IGG or IGE allergies, you are avoiding many foods.
The first few years of our little guy's life were really a blur. I spent countless hours in the kitchen trying to make meals out of a short safe-foods list.He was very small (and still is) so my main “job” was to feed him. That sounds a lot easier than it is. Most allergic children have food aversions. We continued to visit the allergist, pediatrician, GI specialist and nutritionist. All of the sudden, this little bundle of joy became a huge job like I have never known (and he is our third child). I am blessed to be a stay-at-home-mom but could it really be THIS hard??
It’s More Than Just Dealing with Food Issues
In addition to the food issues,we also had social issues. Can we really go to church, Bible study, MOPS, storytime and the park where other children are running around with frosting or cheesy crackers on their fingers? Scary! I found myself quarantining ourselves off during this journey. My main goal was to keep him safe while increasing his weight ever ever so slightly each month.
The expenses of Neocate, pediatric doctor's appointments, GI specialist appointments, allergists andmedicine (reflux) were more than we could bear. After several years of purchasing Neocate out of pocket, I started submitting letters to our insurance company. All of them came back with a standard “Request Denied”.
How My Grassroots Effort for Insurance Coverage Started
Then I met a wonderful family who has three boys. Their oldest is five and has eosinophilic esophagitis (EE). He desperately needs Neocate but with no insurance coverage, the cost is too high. His mother actually works for the hospital and the hospital insurance plan wouldn't cover Neocate. This little guy is the tiniest little five year old you have ever seen. It breaks my heart to know that he isn't the only little person who isn't getting the nutrition he needs. Many children who need Neocate don't get nearly enough or don't get it at all.
Then I heard of one family who tube feeds their child because if you tube feed, it is covered by insurance. Unbelievable! They said they hope when he doesn't need Neocate, he can be weaned off tube feeding and not have food aversions. This is just unacceptable. Neocate needs to be covered by insurance.
My blood began to boil...
After about three years of dealing with food allergies and purchasing Neocate, I decided to reach out to any others and see if they were receiving insurance coverage. We have a website where moms meet in our local area. I got back two responses from other moms who were purchasing Neocate for their little food allergy people also.
I chatted with those moms and the more I chatted, the more determined I got!
Stop back for the second half of Brenda Eich’s story about how she started a grassroots campaign to win medical insurance coverage in South Dakota for amino acid-based formulas.
With the help and hard work of many families, there have been several states that have mandated legislation for medical insurance coverage of amino acid-based formulas such as Neocate. This is fantastic news that will help to provide financial relief for families.
The current states that require coverage for amino acid-based formulas:
Every state and every law/agreement is different so be sure to read thoroughly to understand the limitations before contacting your medical insurance company. For example, the Maine legislation only pertains to children under the age of 2. In the state of Minnesota, there is no law requiring coverage, however, the state’s six largest insurance plans have agreed to reimburse families for amino acid-based formula. We have a full list of the states that reimburse and information on each law at Neocate.com.
Tips for Amino Acid-based Formula Reimbursement
A few tips to keep in mind when pursing reimbursement in each of these states are listed in the reimbursement section of Neocate.com. For instance, most of the mandates/agreements only require coverage of amino acid-based formulas for the diagnosis and treatment of certain medical conditions (i.e. eosinophilic gastroenteritis or multiple food protein intolerance).
If your state is not listed and you would be interested in joining the fight for coverage in your state, check out the guidebook for enacting legislation from Children’s Magic. Children’s Magic is an organization committed to promoting reimbursement for elemental formulas. They have put together this guide to help point you in the right direction.
Stay tuned for a guest blog post from Brenda Eich next week. We are honored to have her share her story on her successful fight for medical insurance reimbursement in South Dakota! Does anyone else have success stories or tips to share with getting insurance coverage for Neocate?
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?
With help from State Representative Todd Schlekeway, a group of families in South Dakota have introduced a new bill that would require insurance companies to cover amino acid-based formulas like Neocate.
Keloland Television in Sioux Falls, South Dakota recently did a story on the bill and shared the story of the Kurtz Family whose two children, Annie and Quincy, both have milk protein allergies. Annie relies on Neocate for the nutrition she needs to survive, and her mother April is eager for the bill to pass so that it can bring some much needed economic relief to her family.
Hopefully South Dakota will pass the bill requiring reimbursement of amino acid-based formulas and join other states like Arizona, Connecticut, Illinois, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon, Rhode Island and Texas, which have passed similar legislation.
If you are interested in introducing reimbursement legislation in your state, please visit the Children’s MAGIC website and download the "Guidebook to Enacting Legislation," which can help you get started.
Great news for Texans – A new law, effective January 1st, requires insurance companies to reimburse families for amino acid-based formulas like Neocate. You can read the bill here.
The new insurance reimbursement law in Texas applies to health plans that are delivered or renewed after January 1, 2010 and covers formula used to manage:
IgE and non IgE-mediated allergies to multiple food proteins (i.e. milk protein allergy);
Severe food protein-induced entercolitis;
Eosinophilic disorders; and
Impaired absorption of nutrients caused by disorders affecting the absorptive surface, functional length, and motility of the gastrointestinal tract.
The insurance reimbursement is required whether the formula is taken orally or via a feeding tube. Plus, it covers the entire Neocate product range, including Neocate Infant, Neocate Junior, and E028 Splash.
Other states with reimbursement legislation for amino acid-based formulas include Arizona, Connecticut, Illinois, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Oregon and Rhode Island. However, each state’s laws are slightly different – Check out a copy of a specific state's legislation.
This is exciting news for families in Texas and we hope it will provide them with some economic relief. If you have any questions about how the new Texas legislation will affect your family, please don’t hesitate to call us at 1-800-NEOCATE.
And don’t forget to share the news with others too! You can tweet the news, post a link on Facebook or share it with your support groups.
Happy Thanksgiving! This month, my colleagues Sarah, Mallory, Christine and I decided to do a series of “Why I’m Thankful” blogs. I hope my post finds you in good health and enjoying the long, holiday weekend!
To start off, I am thankful for my family and friends — without them I would not be the person I am today. They bring support, happiness and laughter into my life.
Like Mallory, I am also thankful for the improvements in science and how far we’ve come. When I was a little girl, I suffered from milk allergies and was very underweight. My family did everything they could to ensure I gained weight properly and I was able to thrive without milk in my diet. Still, it was quite a struggle, as I’m sure you know firsthand from your experiences with your little ones! Like so many allergy kids, as time passed I finally outgrew my allergies and eventually I even outgrew my nickname “Spaghetti Legs”. This came as a huge relief to both me (after years of being unable to do so, I could finally eat ice cream!) and my family.
Neocate formulas and Duocal would have been optimal for my growth; however, they were not available when I needed it. Both Neocate and Duocal provide families with options I did not have when growing up with a milk allergy and underweight. Families can rely on our hypoallergenic, amino acid-based formulas and not have to worry that their child isn’t getting the proper nutrition they need to grow properly. Although I wasn’t able to benefit from Neocate or EO28 Splash, I am so thankful the families I talk to everyday are able to feed their children these formulas which are able to alleviate some of the stress of parenting a child with food allergies.
Lastly, I’m thankful for you! Since starting here at Nutricia, I have learned more about your families, and been able to provide resources and assistance to make your lives easier. It has been a joy getting to know you and helping your little ones!
I get a lot of questions from Neocate parents about constipation. Amino acid-based formulas like Neocate Infant do not technically cause constipation, but instead slow down the frequency of the bowel movements in babies.
Neocate is a low residue formula, meaning that it has very little waste to excrete which causes less frequent bowel movements - everything in the formula is getting absorbed! Also, some babies on Neocate may have already been prone to constipation because of the GI issues caused by allergies or other conditions and it may have been overlooked. Keep in mind all babies have different stool patterns, but typical stool frequency can be around 1 stool per day.
One telling sign of actual constipation (not just the effect of a low residue formula) is bowel movements that are hard or pellet-like. You might also notice that your baby is grunting, straining or seems like he or she is relieved right after having a bowel movement.
If this sounds like your little one, don’t worry! There are a few tricks that can help relieve their discomfort. Try moving their legs around to get things moving through their digestive system, or gently massage their tummy. Check with your doctor about giving your child some water or prune juice to hydrate them. In extreme cases, your doctor can also give you some alternative solutions which can stimulate a bowel movement as well.
You may have read Sarah’s “Why I’m Thankful” post last week. If you missed it, we are doing a series this month where we each share what we are thankful for in our own lives. This week is my turn!
I’m thankful to be living in a time with such advanced medical care. Every day I work with families of children whose lives depend on a special food or a special way of receiving nutrients. It scares me to wonder what happened to these children before we had such technology. Some of our Neocate users are allergic to just about everything. Before there were amino acid-based formulas, how could these children thrive or in some severe cases, even survive?
This issue also touches me on a personal level. My little sister, Caroline, has special needs and has depended on various products of technology throughout her life. When she was little, it was a struggle to get enough calories into her and she grew very weak, falling further and further off the growth charts. Her doctor prescribed Duocal, which allowed her to get enough calories to maintain weight and stay healthy. She now has a feeding tube due to dysphagia (swallowing problems) and she is doing great with it! The development of enteral nutrition has allowed children who can’t physically ingest food to get all the nutrients they need to survive and thrive - another great example of an obstacle that medical advancements have allowed us to overcome!
How have medical advancements/technology been a blessing to your family?
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:
The number of people that are getting diagnosed with EE is rising but the condition is still relatively unknown. EE is often caused by food allergies and children with this condition are usually on a severely restricted diet. Because of this, many of them use an amino acid-based formula like Neocate as their source of nutrition.
Since this rare disease often goes undiagnosed for months, National Eosinophil Awareness Week is a great time to help raise awareness about these conditions. To find out what events are going on during the awareness week, click here.
And to see what another family is doing to raise awareness about EE, check out this blog entry about Tami and her son Justin of Richmond, Virginia.
Recently, I’ve received a lot of questions regarding the different types of hypoallergenic formulas that are out there. Often, babies with milk protein allergies will try several formulas before finding one that actually works. Here’s a run-down of formulas for you.
Hydrolysate Formula: Nutramigen and Alimentum are hydrolysate formulas. Although these formulas are hypoallergenic, the protein in these formulas is only partially broken down. Therefore, allergic reactions can still occur when on this formula.
Amino Acid-Based Formula: Around the office, this formula has been called “super” hypoallergenic, meaning it is made from individual non-allergenic amino acids, making it easy for babies to digest. Neocate and Elecare are both amino acid-based formulas, but only Neocate is manufactured in a 100% dairy free environment.
Sometimes, babies with symptoms of milk protein allergy are given a hydrolysate formula first to see if it works. If the baby is still sick after several weeks, the doctor then recommends switching to an amino acid-based formula. However, that can mean many weeks (that feel like an eternity!) of a sick, miserable, undernourished baby and exhausted, stressed out parents.
So, some doctors recommend starting with the amino acid-based formula – which they know will provide the baby with relief fast if he or she has milk protein allergy. If the baby does well on it (for infants with milk protein allergy, symptoms usually resolve within three days of starting Neocate), after a few weeks parents can try to transition the baby to a hydrolysate. If the Neocate doesn’t help the baby, that tells the doctor right away that it is not a milk protein allergy causing the baby’s symptoms and the medical team needs to do some more investigative work to find out what’s really wrong. If you have a baby recently diagnosed with milk protein allergy, talk to your doc about the best approach.
If you think your little one might have a milk protein allergy, but hasn’t been diagnosed yet, make an appointment with your doctor.
A few days ago, I came across a great article in the Wall Street Journal Health blog. The blog, entitled, "Pushing Back When Insurers Deny Coverage for Treatment," is all about the ways you can appeal insurance coverage denials.
For a parent whose child has a milk protein allergy, this can be extremely useful! The article has great tips you can use particularly when fighting for insurance coverage of amino-acid based formulas, like Neocate.
When my wife and I were expecting our first child, a lot of questions went through our minds, such as “My God, what have we done!”
Just kidding, we knew from the first kick Vincent would be awesome.
But we did ask ourselves a lot of big questions, including just how many ways are there to manufacture a sippy cup? And how do two people choose one from the entire wall of sippy cups at Babies R Us? What exact temperature should the bath water be? And how many IQ points is the kid going to lose if we paint the nursery the wrong color?
When you find out your baby has a food allergy, there’s a whole new set of questions. And just what exactly do you feed the little guy or gal is at the top of the list.
If you’re a breastfeeding mother, you’ll need to work with your healthcare team to identify everything the baby is allergic to and remove all those foods from your diet. If the baby relies on formula for some or all of his diet, you’ll need to make a formula change. But what do you change to?
Here’s the 411 on the different types of formula and what you should know about them if you’re a food allergy family.
Cow’s milk formula
This is most of the formula you’ll find in the grocery story aisle. It’s based on cow’s milk and fine for most healthy babies. But milk allergy is the most common food allergy among babies. So that milk, which contains full protein chains, is bad news for a food allergy baby.
This formula is based on soy instead of cow’s milk so it is dairy-free, but it is still not recommended for a food allergy baby, since as many as 70% of babies with a milk allergy also have a soy allergy.
Instead of the full protein chains in cow’s milk formula, hydrolysate formulas have protein chains that are broken into smaller pieces. This makes the formula easier for some food allergy babies to digest, but it doesn’t help everyone.
Amino acid-based formula
This formula doesn’t contain any protein chains at all. Instead it contains the individual amino acids that make up a protein. Essentially, it is baby’s nutrition in its simplest form and the absolute easiest thing for a milk allergy baby (or any baby with gastrointestinal issues) to digest. Using an amino acid-based formula like Neocate typically clears up a milk allergy baby’s gastrointestinal symptoms in 3-5 days and any skin rash associated with the food allergy within 2 weeks.
This is the basic rundown. If you have any further questions, feel free to post a comment below.
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.
Great news for food allergy families! I just found out that the Maryland House Bill 578, requiring health insurance coverage for amino acid-based elemental formula, was signed at 10:00am yesterday by Governor Martin O’Malley (D). Essentially, this bill requires insurance companies in Maryland to reimburse families for amino acid-based elemental formulas, like Neocate, that are medically necessary for the “diagnosis and treatment of certain allergies, syndromes, and conditions.”
The coverage of amino acid-based formulas will be available to all policies, contracts and health benefit plans issued, delivered or renewed in Maryland on or after October 1, 2008.
Similar legislation has already been passed in the following states: Arizona, Connecticut, Illinois, Massachusetts, Minnesota, New Hampshire, New Jersey and New York. Click here to view a copy of each state's legislation.
If you don’t live in one of the above states and are interested in finding out how you can help get legislation passed it your state, visit Children’s Magic.
I expect this will provide a lot of much-needed relief for many Maryland food allergy families. Hopefully, more states will follow with similar legislation.
Last week, The Journal News, a newspaper in White Plains, NY ran an interesting story about a little girl who “can not eat food.” Three-year-old Hannah Devane has a condition called eosinophilic esophagitis(EE). It’s a very serious condition and many people don’t realize that food allergy is actually the principle cause of EE.
The story focused on the Devane family’s difficulty getting their insurance company to pay for the amino acid-based formula Hannah needs – which is really a shame. But discussion on the Journal News message board and on The Consumerist blog also showed me that there is a lot of confusion about EE. So, I thought I’d clear a few things up here.
Kids with EE are allergic to the protein in foods such as milk, soy, nuts, eggs, etc. so the condition really limits their food choices.
This allergy causes a build-up of white blood cells (eosinophils) in the esophagus which is a sign of inflammation. This inflammation causes difficulty swallowing, vomiting, regurgitation, and/or abdominal or chest pain. (The symptoms usually differ slightly for each kid.)
Usually, EE kids can only have a very few “safe foods.” For Hannah Devone, it is rice and pears.
Rice and pears alone cannot provide adequate nutrition for a 3-year-old. So, kids with EE rely on special amino acid-based medical foods (that won’t make them sick) to get the nutrition they need.
Medical foods are not like vitamins or supplements you buy at a health food store. They have a special FDA designation, are deemed “medically necessary” for people with certain conditions, and families must have a recommendation from a healthcare professional to order them from the pharmacy or manufacturer.
Some doctors do prescribe steroids for the EE symptoms so they can eat food, but steroids have not been shown to be as effective as amino acid-based medical foods and they can cause a lot of side effects.
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.
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.
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!
Since we rolled out our new and improved Neocate website a couple months ago, we wanted to make sure Neocate families understood the resources we have available. To find these resources all you need to do is log onto www.Neocate.com.
Once you are on the Neocate website, click on the tab at the top of the page, that says “Help for Parents”. This is where you will find the “Parent Toolbox” which has these great resources:
Symptoms checker – The Symptoms tracker is an interactive quiz. The questions listed in the quiz will help you to find out if a food allergy could be the cause of the troublesome symptoms your little one is experiencing. Answering these questions will bring you closer to determining if and how your child is effected. Don’t fail to discuss the test results with your child’s doctor.
Online Diary - The online diary is “coming soon” and will be a great way to record all things concerning your child's nutrition and symptoms. It will be easy to use, allow you to upload a photo of your little one and to keep track of your child's weight and height. You will also have the option to filter and print your diary entries in order to discuss them with your doctor.
Find a Pharmacy - This is a very handy resource for families needing to buy Neocate from a pharmacy due to insurance coverage. Here you can search by state to find a variety of pharmacies in different cities that usually have Neocate in stock, or have access to Neocate within 24 hours upon request. Keep in mind, if you are paying out of pocket for Neocate, buying directly from us will be the cheapest route. Do not hesitate to contact any local pharmacy to ask about special ordering of Neocate products. If your pharmacy has any questions, please ask them to contact Nutricia directly at 1-800-Neocate, 8:30 a.m. – 8:00 p.m. ET, Monday through Friday.
We hope you find our “Parent Toolbox” resources helpful. Here at Nutricia we are committed to helping families find answers regarding food allergies. Don’t forget that if you have any questions, you can reach out to our team of Nutrition Specialists who are there to help every step of the way.
Q: My son has severe allergies and his pediatrician recommended Neocate. I see that it’s expensive and isn’t available at the store. I’ve also been online and see that similar products exist. Can you tell me what makes Neocate so special?
A: We get this question often. Not only have most parents never heard of Neocate, there are still some health care professionals who aren’t familiar with Neocate either.
Setting the Bar
Neocate was the first of its kind, and we set the bar high. The Neocate products are amino acid-based formulas, which by nature makes them special. The fact that Neocate is made with amino acids instead of protein is what sets it apart and allows it to help so many children to feel better. With Neocate, Nutricia is committed to producing the best amino acid-based formulas possible.
First, we ensure that our customers get a product that will not cause a typical allergic reaction. To start, none of the Neocate ingredients are derived from milk, and we mix the Neocate powders in a facility that is 100% dairy protein-free: no cows allowed! We also test every batch of Neocate for dairy, just to be sure. And with E028 Splash, we also test for gluten to ensure it’s gluten-free.
Specialized Products for Special Kids
Because many children need Neocate for more than just a few weeks, we want their Neocate experience to be as easy as possible. We do this by offering more options. For instance, Neocate Nutra is the only amino acid-based semi-solid food available. We also make Splash, the only ready-to-feed (no mixing needed) amino acid-based formula. On top of this, we offer lots of flavors in Neocate Junior, E028 Splash, as well as Flavor Packets. To top it off, Neocate Junior with Prebiotics is the only amino acid-based formula available with prebiotic fiber, which can help improve regularity. We think all of these make Neocate great and help children to stick with an elemental diet.
We’ve gotten to work with lots of researchers, many of whom are leaders in their field. And not just in the US – plenty of research with Neocate has taken place internationally on six continents! This research has helped to improve the way medicine is practiced, including diagnosis and treatment. We’re pretty proud of that! We even have a team of researchers based here in the US working on current Neocate studies. This is just one example of our dedication to advancing medical research.
Finally, families new to Neocate often feel like they’re in unfamiliar territory. This is why we offer lots of reimbursement support, which is incredibly helpful for many of our customers.
The most important factor that makes Neocate special? Neocate kids! We love getting to talk to parents about their little ones every day, especially when they tell us how helpful Neocate has been and share good news. Hearing how special they are just makes our work that much more important.
The term “elemental diet” is a historic term that was used to refer to diets where the component nutrients were broken down into their “elements.” Another term is “semi-elemental.” In terms of nutrition, a semi-elemental formula, or hydrolysate, is one that has proteins that are partly broken down, or hydrolyzed. These can be partially or extensively hydrolyzed. An elemental formula, then, is one that contains only amino acids, the building blocks of protein. Elemental formulas can also have some fats which are easier for the body to absorb than those found in the standard diet.
Now, technically speaking, elements are atoms, like you would see on the Periodic Table of the Elements. So, technically, Neocate is not elemental, because it’s made of molecules, not individual atoms. So in the strictest sense Neocate isn’t elemental: no formula is! But, many health care professionals still use this term. The more accurate term for Neocate, which you’ll see on our website, is amino acid-based formula.
An elimination diet is one in which one or several foods are eliminated from the diet. There is no one “elimination diet:” it often varies from patient to patient. Elimination diets can be based on the results of specific allergy testing (a tailored elimination diet), or more loosely based on common food allergies. For instance, a six-food elimination diet is often used. The idea behind an elimination diet, commonly used with EoE, is that you give the body a break from certain offending foods so that inflammation can calm down. This works best if ALL foods that are causing a response are eliminated, which is why the six-food elimination diet isn’t quite as effective as a tailored elimination diet.
Where the lines get blurry between these two terms is that sometimes an elemental diet is used as a total elimination diet (so ALL food is eliminated!). Basically a child might go on an elemental diet for a period of weeks, after which they usually start adding foods back to the diet one at a time. That way there is no mistaking an allergic response to a specific food. On top of this, an elemental formula like E028 Splash might be added to a six food or tailored elimination diet, to help make sure a child gets all of his/her essential nutrients when foods like dairy are removed. What’s interesting is that studies have shown that the best response in EoE is to a fully amino acid-based diet.
Do you have any questions about the differences between elemental and elimination diets?
When Tracy shared her story, I came to better understand FPIES and the unique challenges it presents both for the families dealing with it and for the physicians diagnosing it. I’ve written the following to help you better understand FPIES using personal stories moms have shared with us along the way.
When [my baby] was 6 months old, my milk supply started to drop so I was told to give him some milk formula. … Almost immediately, … he started to projectile vomit. We took him to the ER of our children's hospital. By the time they got to us, he had stopped vomiting and was just a happy baby. They patted us on our heads and told us it was just a milk allergy and sent us on our way. …A few weeks later, Ben started vomiting 1 1/2 hours after [feeding], and I was told (by the pediatrician's nurse) he just had the flu. But I could tell it was more than that.
A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return, often more rapidly after ingestion.
Mason was "big and healthy" but nearly died (vomited until he became dehydrated, went into shock and stopped breathing) after starting rice cereal at 4 months of age.
FPIES reactions often show up in the first weeks or months of life, or at an older age for the exclusively-breastfed child. Reactions usually occur upon introducing first solid foods, which are typically made with dairy or soy, such as infant cereals or formulas. (Infant formulas are considered solids for FPIES purposes.) Although the most common FPIES triggers are cow's milk (dairy) and soy, other solid foods can cause an FPIES reaction, even uncommon food allergens, such as rice, oat and barley.
Reactions are frequently characterized by profuse vomiting and diarrhea. Upon removing the problem food(s), all FPIES symptoms subside.
A typical reaction takes Evan about four days to recover from. His most recent exposure was a single bite of a bagel with cream cheese on it. Within two hours he had vomited three times, and began diarrhea that put him through 32 diapers in as many hours. ... Evan's reactions occur approximately two hours after he ingests food, with dairy in any form or strength causing his most severe reactions.
FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock). In severe cases, after repeatedly vomiting, children often begin vomiting bile. Commonly, diarrhea follows and can last up to several days. In the worst reactions (about 20% of the time), the child has such severe vomiting and diarrhea that he rapidly becomes seriously dehydrated and may go into shock. One characteristic is that these children do not have other typical symptoms of allergy develop as part of these reactions (e.g., hives, wheezing, atopic dermatitis, swelling, etc.).
… At 7 months, I weaned him. … So, we gave him a bottle of soy formula (assuming it would all be fine because he was JUST allergic to milk according to all the docs. One and a half hours after Ben had eaten, he started projectile vomiting again and passed out. We took him to the ER and they decided to admit us. The allergists still didn't think it was an allergy—they thought these were all flukes—and I believed them. … They decided to do a soy oral challenge (because nothing was showing up on the RAST [blood allergy test] for soy). He failed it miserably!! They had to call a code blue and then admit us from the allergy clinic. It scared the allergists (and me for that matter) half to death. So, because they had called a code blue, they had to write an incident report. Because of that report, someone else looked at Ben's case and figured out that he has FPIES.
Debbie’s son went into shock, which is a severe reaction due to FPIES. As with all things, each child is different, and the range, severity and duration of symptoms may vary from reaction to reaction.
One night in my frustration, I thought that she did well with the soy formula, so I would try a bottle of that again and see if she would eat. She ate about half of that bottle and then refused it. My husband took her and she started profuse vomiting again. I gave her a quick bath because she was soaked to the bone. She vomited the whole time; I was only able to put a diaper on her before she went white as a ghost and totally limp and unresponsive. She was like a rag doll and wouldn't move. We rushed to the local children's hospital branch close to our house. They immediately took her into trauma and started to work on her. She wouldn't respond to anything, not even needle pricks. They gave her oxygen, and IV, thermal blankets, etc. They finally got her stabilized and sent her to the main children's hospital downtown by ambulance. At the hospital, after a dozen different kinds of tests, she was started on Neocate® formula.
Since rapid dehydration and shock are medical emergencies, your local emergency service (9-1-1) needs to be contacted when a reaction like this occurs.
The most critical treatment during an FPIES reaction is intravenous (IV) fluids because of the risk and prevalence of dehydration. Children experiencing more severe symptoms may also need steroids and in-hospital monitoring. However, use of antihistamines and epinephrine are not helpful because FPIES works through a different mechanism than a “regular” IgE mediated allergy. Mild reactions may be able to be treated at home with oral electrolyte re-hydration (e.g., Pedialyte®). Because it's a rare, but serious condition, in the event of an emergency, it is vital to get the correct treatment. Some doctors provide their patients with a letter containing a brief description of FPIES and its proper treatment. In the event of a reaction, this letter can be taken to the ER with the child.
Dietary modifications vary, depending on the patient’s specific reactions. Often, infants who have reacted to both dairy and soy formulas will be placed on hypoallergenic or amino acid-based formula. Some children do well breastfeeding. Other children who have fewer triggers may just strictly avoid the offending food(s).
New foods are usually introduced very slowly, one food at a time, for an extended period of time per food. Some doctors recommend trialing a single food for up to three weeks before introducing another.
Ian did well until we tried to reintroduce milk at our GI doctor's suggestion. Ian vomited once with a small quantity of milk. A [blood] RAST test then came back negative and I was told to try the milk again. This is when the "textbook" FPIES reaction occurred. One and a half hours after ingesting a tablespoon of milk, my son experienced severe vomiting (at least 30 times) and pretty much passed out in my arms immediately. We had to be rushed via ambulance to the hospital where IV fluids were given. He recovered after a few hours.
FPIES is hard to diagnose because it is a non-IgE mediated immune reaction in the gastrointestinal system. This means that traditional blood or skin testing will be negative for the foods that cause FPIES reactions. Unlike traditional IgE-mediated allergies, FPIES reactions do not manifest with itching, hives, swelling, coughing or wheezing. Symptoms typically only involve the gastrointestinal system; other body organs are not involved.
FPIES is a rare condition that often goes undiagnosed, or can take a while to diagnose because traditional allergy tests are negative and the diagnosis is typically made based on symptom presentation. FPIES can be a very frightening condition to deal with, especially before it’s diagnosed when the child is experiencing severe and unexplained reactions to first foods or formulas with dramatic symptoms of lethargy or shock. A correct diagnosis and dietary avoidance of the offending foods is essential to manage and avoid further FPIES reactions.
I hope this information is helpful to you. If these stories sound familiar regarding your own child, print out the patient education resource below and speak with your child’s physician.
Lynda Mitchell is the founder and president of the Kids With Food Allergies Foundation(KFA). Lynda knows from personal experience that parents raising children with food allergies struggle to keep their children healthy and safe. And, like her, many become empowered by telling their stories and connecting with each other for emotional support and information-sharing. To meet these needs, she first organized the online group POFAK (Parents of Food Allergic Kids) in 1998, to connect parents. Then in 2005, to help more families, she organized KFA as a national charity focused on day-to-day food allergy education and support for families. She has a master’s degree in health information management and informatics and lives in Doylestown, Pennsylvania, with her husband, a retired naval officer, her son, and her two Labrador Retrievers.
Names of moms and/or children in this blog post have been changed out of respect to the members of our community.
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.