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!

Also, feel free to check out our NeocateUS YouTube channel for videos from Karen as well as our Nutricia team! 

- Sarah 

Our post today is a guest blog entry from Rachel Miller, Baby E’s mom. We’d like to thank Rachel for guest blogging for us.

Never could I have imagined that adding another bouncing baby boy to our family last summer would not only add extra snuggles and smiles, but that it would also add a seemingly long and sometimes stressful journey into the world of food allergies. 

Baby E was born last August happy and healthy.  He was welcomed home by mom, dad, and his two big brothers.   Almost right away Baby E started showing signs of possible reflux.  We had been down the reflux road before since big brother 2 had reflux when he was a baby.   So when Baby E started sounding like something out of Star Wars (think Darth Vader), I mentioned to his doctor that I was concerned his nasal congestion was being caused by reflux.  So, Baby E was put on reflux medicine and it seemed to help a little bit. 

Baby E Before

Then came the eczema.   Baby E was like a snake (but way cuter).  He started shedding away his soft newborn baby skin, and angry red baby acne took its place.  The doctor said it was completely normal and likely caused by hormones.  It was at this point that I started to consider the possibility that Baby E may be reacting to something in my diet.  Refluxand terrible skin?  But, I shrugged it off.

Then came the mucous-filled diapers.  I knew from having been down the breast-feeding diaper route before, mucous is an uninvited guest.  Seeds, yes.  Mucous, no.  He also had terrible tummy aches and painful gas.  He would often cry and had a hard time settling down.   Gas relief drops didn’t seem to help.

Then came the blood and green poops.  There is really no way to shrug off lime green bowel movements with streaks of visible blood throughout.  I immediately took Baby E back to the doctor where they took a stool sample and made sure Baby E didn’t have an infection.   No infection.  And so our journey began.  

 I knew I wanted to continue breastfeeding Baby E, so at the doctor’s recommendation I cut dairy out of my diet immediately.  Baby E seemed to make slow improvement after only a few days.   We then eliminated soy as well.  After almost two weeks of being dairy and soy free, Baby E had “better” diapers but not normal. 

This is where TED entered my life.   Total Elimination Diet. 

Unfortunately, my doctor was not able to offer much advice or information about TED, so I found most of my information from infantreflux.org and kellymom.com.  Determined to get kick mucous out of this diaper party and to continue to breast-feed my “intolerant” child, I started eating nothing but chicken, turkey, rice, potatoes, apples, and bananas.  Being on such a restrictive diet allowed me rid Baby E of mucous diapers, reflux, and his eczema.  Then I slowly added foods back into my diet and waited for a reaction. This was how I was able to determine that Baby E cannot tolerate dairy, soy, eggs, and tomatoes.  So now, I am still breastfeeding but avoiding these foods in my diet, and Baby E is doing great!   

Baby E After

Our journey is still continuing.  Since starting solid foods Baby E has had reactions to pears and infant oatmeal cereal.  In spite of this, I feel lucky and blessed that Baby E is doing so well and that I am able to continue breastfeeding him. 

-Rachel Miller

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

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

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

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

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

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

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

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

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

We've shared R.J.'s story before (and his little brother Ken). As a child he had severe,painful eczema that covered his entire body. His parents tried everything, but he didn't find relief until they switched to Neocate.

We wanted to share this sweet video that his parents sent to us recently. Today R.J. is 5 years old, and doing great! He is still allergic to milk, but Neocate has helped make him a happy and health little boy.

R.J. Happy & Health Video

-Sarah

Our post today is a guest blog entry from Karen Adams, Israel’s mom. We’d like to thank her for guest blogging for us.

I've heard several mothers talk about how their baby was fine at the hospital, that their problems didn’t begin until they got home. Our experience didn’t happen like that. From the very first day my son Israel, wouldn’t sleep, but instead screamed and cried constantly. Nothing seemed to soothe him. Our last night at the hospital, we asked the nursery to take him, so we could get some sleep. 15 minutes later they brought him back saying he was kicked out of the nursery, because he cried too much.

Our first night home was spent nervously watching our baby boy projectile vomit, scream and cry. For months Israel would scream and cry and vomit for hours on end. In fact he would cry so hard he would lose his voice. He took only small naps, the most being 45 minutes. He would have diarrhea so badly that he would keep yeast infections on his skin. He would have odd rashes and dry patches of skin. After two pediatricians and trials of cows milk formulas and soy formula. The doctor then switched him to Nutramigen and scheduled an upper GI.

The upper GI confirmed reflux and he was then put on Prevacid. The Nutramigen and Prevacid really seemed to do the trick. He was still a little fussy and spit up quite a lot. But the doctor wasn’t concerned and felt we shouldn’t be either. But being his mother, I just couldn’t let it go. He could drink water and hold it down, but his formula he would spit up. I knew he could do better. After a few weeks of research I found out about Neocate.

I had read so many testimonials about how Neocate and Prevacid stopped the food allergy reactions and reflux issues. Could it be true? His pediatrician thought the problem was reflux, lactose intolerance and classic “Colic”. And that I simply worried too much.

Finally after several visits he agreed to send my son (6 months old) for an allergy test. He tested positive for Milk, Soy, Corn, Pork, Peanuts, Apples, and Rice and positive for some other intolerances. FINALLY I had my proof!!! The allergy specialist gave me a prescription for Neocate and I rushed it to the pharmacy as quickly as possible.

That afternoon we gave him his first bottle of Neocate. He took the bottle and guzzled it down. We watched and waited, and to our surprise no spitting up! We realized not only had the other formula's been causing spit up but also had made him irritable. He started gaining weight, sleeping through the night and generally acting satisfied within a week of being on Neocate. Now he is happy, healthy and full of energy! He just turned one year old in December 2010 and now we are starting on Neocate Jr. As a mother, I couldn’t be happier!

Thanks to Neocate!

-Karen

Karen and Israel's video on YouTube

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 hydrolysate formulas (such as Alimentum, Nutramigen and Pregestimil), 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 hydrolysate formula is and how they differ from elemental or amino acid-based formulas. The main difference is: hydrolysate formulas have milk proteins in them! Amino acid-based or elemental formulas, like Neocate, are 100% milk-free and made up of non allergenic amino acids (the building blocks of protein) so there is a very slim chance of a child having an allergic reaction to them.

The reason hydrolysate formulas can say they are hypoallergenic is because the milk proteins they use in the formulas are 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 elemental or amino acid-based formula comes in. It is sometimes stated that amino acid-based formulas are “super” hypoallergenic compared with hydrolysate formulas. This basically means amino acid-based formulas are more hypoallergenic than hydrolysate formulas.

In general, studies show that amino acid-based formulas are tolerated by 98% of severely allergic babies. Although many food allergy babies tolerate hydrolysate formulas, there is a subset that do not - often showing with symptoms like severe diarrhea, vomiting, rashes and failure to thrive.

A relatively recent study demonstrates the intolerance concern with hydrolysate 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 food allergies did not tolerate the hydrolysate formula². This is important to know especially if your little one (or someone else’s infant) is still having food allergy related symptoms and is currently using a hydrolysate formula.

Did your child not tolerate a hydrolyzed formula? What did you do?

- Christine

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.

We are excited to announce the winners of our Neocate Video Contest. Thank you to those that participated and helped raise awareness about food allergies with their touching videos!

Our first place winner is “Matthew’s Story”. Check out his video to find out how EO28 Splash keeps him movin’ right along.

Our second place winner is “Joshua’s Story”. His video shares his journey with eosinophilic esophagitis and life without food.

Has anyone else made videos to raise awareness about food allergies? We’d love to see them – be sure to post a link in the comments!

- Sarah

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.

- Brittney

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.

We would like to thank Kendra Tiedemann for guest blogging for us and sharing her family’s allergy story. Stay tuned for her next entry about her other son Norman!

If you were to ask my son’s classmates about him, they would describe a typical five-year-old boy. They would say that Paulie likes cars, trucks, dinosaurs, and making noise. They might also tell you that he skips lunch every day. What they may not tell you is that Paulie is allergic to dozens of foods, or that simply sitting with his friends for lunch in the cafeteria would be a danger to his health.

Paulie began showing signs of allergies as an infant. He developed eczema by 10 weeks of age. Traditional therapies were ineffective. By five months, Paulie was wheezing daily. After hours on the phone, looking for an allergy specialist, I knew exactly what the next call would bring. “We don’t do allergy testing until after age two. Call again in 18 months.”

Our lives changed dramatically when Paulie, still just eight months old, was rushed to the hospital after he stopped breathing. The allergist we saw afterward indicated the symptoms were consistent with a severe allergic reaction. Allergy testing came up positive for some foods and animal dander. Removal of allergens from Paulie’s diet and reduction of animal dander in our home decreased symptoms, but there were still unexplained flare-ups.

Two months post-diagnosis, we were visiting family for the holidays where each day started with a hot breakfast. Paulie’s asthma and eczema flared each morning shortly after we entered the kitchen, but only sometimes during lunch and dinner. Finally the pattern was clear. He was reacting to food proteins in the air! We learned not to cook or reheat anything with eggs or pork around Paulie. Peanuts and tree nuts were banned from our home completely.

Paulie continued to sensitize to more foods over time. His allergy list grew from two foods to eight, and then to fourteen. Eventually, he was reacting to every food that he’d ever eaten. Additionally, Paulie was diagnosed with another allergic condition: eosinophilic esophagitis (EE or EoE). So, in addition to immediate and potentially life-threatening asthma and skin reactions, Paulie also has delayed GI reactions. These include esophageal pain, reflux and vomiting, generalized abdominal pain and skin-blistering diarrhea that hits one to three days after ingestion of an allergen.

It has been a year and a half since Paulie sensitized to the last of his safe foods. His sole source of nutrition is Neocate One Plus. We use Neocate Nutra, cane sugar and ice to give Paulie the option of sitting down with a bowl of something while we eat. He has adjusted well to his limited diet. When asked what he can eat, Paulie will rattle off his list as though it is carnival fare. “I can have special juice and special food and ice! Big ice, little ice, snow cone ice and ICE ice! And cotton candy and popsicles and freeze pops and…"

I am incredibly thankful that Paulie handles the restrictions so well, and often look to his example when we encounter food in an unexpected place.

-Kendra Tiedemann