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Success Stories

Below is just a small sample of the stories that we get every day — see how Nutricia's medical nutritionals have changed lives.

Testimonials — GI/Allergy

Neocate Gives R.J. Eczema Relief in 5-Days

Patient History: At two and a half months old, R.J. was experiencing a painful, itchy, red rash on his cheeks that quickly spread to his chin, ears and neck. By the time he was four months old, the condition worsened, spreading to his scalp, back, stomach, legs and diaper areas.

Baby R.J. was miserable. The rash was so itchy and irritating that he was constantly scratching his face and rubbing it against anything he could find. He was extremely fussy, crying excessively and having difficulty sleeping.

R.J.’s condition affected the entire family.

His father said “I personally had a difficult time eating and concentrating at work, as it broke my heart to see him suffer.”

Nutritional Management and Outcome: R.J.’s parents took him to several doctors who tried several different treatments, all to no avail. Treatments included topical steroids, topical antifungals and oral antihistamines. They purchased dust-free bedding, allergen-removing carpet shampoos, high-quality air purifiers, a shower filter for R.J.’s bath water, chlorine-free diapers and wipes and 100 percent cotton bedding and clothing. R.J. still had no relief.

R.J.’s mother was breast-feeding and tried eliminating possible food allergens from her diet as well as switching to a milk-based formula and then to Nutramigen (i.e. hydrolysate formula). Nothing worked.

Finally, the family found a pediatrician who recommended Neocate, an amino acid-based formula used to treat infants and children with an allergy to dairy proteins. The dairy allergy can cause a variety of gastrointestinal, respiratory and skin problems. For R.J., the allergy had manifested itself as eczema.

“Neocate worked almost overnight to improve the rash,” says R.J.’s father.
In less than a week, R.J. was sleeping better, crying less and the rash had reduced so much that it was barely visible. R.J. enjoyed drinking Neocate, a nutritionally complete amino acid-based formula that will provide him optimal growth.

Summary: Baby R.J. suffered from a severe case of eczema resulting from a dairy protein allergy. The condition made him – and the entire family – miserable. After a pediatrician recommended R.J. to use Neocate, he improved rapidly and dramatically. The majority of the rash disappeared in just a few days, allowing R.J.’s family to enjoy a happy, healthy baby.

Education: 50%-70% of infants with atopic dermatitis have a milk protein allergy.5

5 Pediatr Allergy Immunol. 1994; 5 (Suppl): 1-36

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Neocate Provides Olivia Relief

Patient History: Anna and Colin adopted Olivia at birth and began feeding her a typical soy-based formula. However, for the first two months of her life, Olivia refused to eat, became dehydrated and cried day and night nearly all the time.
“She arched her back and just looked like she was in pain,” says her mother, Anna.
Not only was Olivia miserable, but the entire family was miserable. Anna felt that bonding with her infant was difficult because the baby was so upset all of the time. Olivia’s older brother felt he wasn’t getting enough attention because so much time and energy were focused on Olivia. And nobody slept well because Olivia screamed and cried most of the night.

Nutritional Management and Outcome: The family made countless trips to the pediatrician as well as several visits to the emergency room when Olivia’s refusal to eat caused her to become critically dehydrated.

Olivia’s pediatrician thought the pain was caused by either colic or gastroesophageal reflux, but reflux medication did not help.

They started Olivia on soy infant formula when they brought her home because the birth family history indicated she might be at risk for an allergy to milk. When the soy formula made her sick, they switched Olivia to a typical milk-based formula. When that did not work, they switched her to a hydrolysate formula. Improvements were small on the hydrolysate formula and Olivia still was not well or thriving.

Anna heard about Neocate, an amino acid-based formula, from an online support group for parents of children with food allergies. Anna mentioned Neocate to Olivia’s allergist and they agreed to try it. Within three days Olivia’s condition dramatically improved. She stopped crying, started eating and began to thrive.

According to Anna, “She became a completely different baby. She became this calm, mellow, happy girl.”

The allergist determined that Olivia had been suffering from an intolerance to the protein in milk and soy. It was the full protein chains in the other formulas that were making her so sick. That is why she was only able to digest the individual amino acids in Neocate.

Summary: For two long months, Olivia suffered from a milk and soy protein intolerance that made her refuse to eat and cry incessantly, making the whole family miserable.

After the family sought out an allergist, Olivia was properly diagnosed and placed on Neocate. Now, she’s a happy, healthy baby.

“Neocate was amazing for our family!” says Olivia’s mother Anna.

Education: Over 60% of infants with cow milk protein allergy have a family history (one or both parents had milk allergy).2

2 J Allergy Clin Immunol. 1996 Mar; 97 (3): 822-7

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Neocate Relieves Aidan's Reflux and Allergies

Patient History: From the time Aidan was born, mealtimes made him extremely uncomfortable.

“He got worse as he got older and we could not pinpoint what was causing the issues,” says his mother Laura.

Aidan was unusually gassy and he experienced painful eczema on his face. His extreme fussiness was hard on the entire family.

Nutritional Management and Outcome: Laura and Brett felt like they were constantly at the pediatrician’s office, who insisted that Aidan was suffering from colic. However, since the baby was losing weight, the doctor told Laura to supplement her breast-feeding with a hydrolysate formula. But Laura says it only made Aidan feel worse.

After doing her own research, Laura suspected Aidan might have some type of an allergy. So, she eliminated multiple foods from her diet, including milk, eggs, wheat and soy. Despite her efforts, Aidan’s condition still did not improve so his parents decided to consult an allergist.

The skin test the allergist conducted on Aidan showed no allergy to soy so the family tried a soy-based infant formula. At the first feeding, the formula caused Aidan to vomit for nearly six hours. That’s when Laura scheduled an appointment with a gastroenterologist who prescribed a medication to treat his reflux symptoms.

Even with the reflux medicine, Aidan was still not a healthy baby. Frustrated, Laura and Brett took Aidan to a new pediatrician. The pediatrician did an upper GI test and blood work that indicated both reflux and an allergy to milk and eggs. Laura asked about Neocate, an amino acid-based infant formula that she had discovered in her research. The pediatrician agreed that Aidan should try this hypoallergenic formula.

“Neocate immediately made a difference,” says Laura.

Summary: It took five long months for Aidan to receive a proper diagnosis of milk and soy allergies and reflux. Once diagnosed, his new pediatrician recommended Neocate, which quickly relieved the symptoms that were making Aidan so miserable. Now Aidan is a happy, healthy baby who is no longer in pain.

Education: Up to 50% of infants allergic to milk protein are allergic to soy protein.3

American Academy of Pediatrics: Infants with cow milk protein allergy should not be given isolated soy protein-based formula routinely4
3 Pediatrics.1987
4 Pediatrics Vol. 101 No. 1 January 1998

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Trevor Thrives on Neocate

Patient History: From the day he was born, Trevor constantly spit up during and after feedings. With each day, his condition got worse.

“As a newborn, Trevor was between the 25th and 50th percentile for growth and by six months he had fallen between the 10th and 25th percentile,” says his mother Jennifer.

By seven and a half months, Trevor’s condition had become so bad that he was vomiting blood. His health problems also began to affect the entire family. Jennifer says she was always on edge and became easily irritated with her other two children because she was exhausted by Trevor’s constant illness.

Nutritional Management and Outcome: For more than seven months, Trevor’s condition caused the family lots of confusion. His doctor prescribed Zantac for possible acid reflux and suggested an immediate switch to solid foods to prevent spit up, but nothing worked. After several months, Trevor’s condition was finally properly diagnosed. He was admitted to the hospital for vomiting blood. The doctor performed an endoscopy that revealed irritations to Trevor’s stomach, intestine and colon. These irritations were caused by a milk protein allergy.

During that hospital visit, Trevor barely weighed 14 pounds, well below the zero percentile on the growth and weight charts. The doctors immediately put him on Neocate, an amino acid-based formula used to treat infants and children with an allergy to milk proteins.

Jennifer eliminated all milk proteins from her diet and tried using Neocate as a supplement to her breast milk. However, it was not until she weaned Trevor and relied on Neocate and some foods that he began to gain weight. One month after being on Neocate, Trevor was back up between the 10th and 25th percentile on the growth and weight chart and has become a much happier baby.

Summary: After Trevor’s milk allergy was diagnosed, his parents were able to ease his symptoms by using Neocate. Once Neocate was introduced into his diet, his spitting up stopped and he quickly grew to a healthy weight.

“My son is such a happy, funny, inquisitive, cuddly baby now,” says his mom.

Education: Neocate Infant delivers optimal growth for infants.1

1 J Pediatr. 1995; 127 550-557.

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Neocate Gives Family Peace of Mind

Patient History: At only two weeks old, Karey and William’s son Wilson started experiencing painful reactions after eating. He suffered from uncontrollable projectile vomiting and continuous back pain. In fact, his stomach hurt so much that Karey and William could not lay him on his back because when they did, the pain would cause him to arch his back as he screamed in pain or choked on his own vomit. Wilson was miserable, extremely fussy and constantly crying. Karey and William also found blood and mucous in his stool.

“Our whole family suffered because it seemed like there was nothing we could do to stop the pain and crying,” says Karey.

Nutritional Management and Outcome: Wilson’s older brother was diagnosed with a milk protein allergy when he was young, so it didn’t take long for them to realize that Wilson might also be suffering from this allergy. Karey, who was breast-feeding Wilson, removed milk and dairy from her diet and supplemented her breast milk with several formulas designed for children with protein allergies. However, Wilson was still in a lot of pain.

Fortunately, Karey and William heard about Neocate, an amino acid-based infant formula, from a family friend.

“We tried it and it was great,” says Karey.

On Neocate, Wilson was able to eat without experiencing any pain. Karey continued to breast-feed, following a strict elimination diet, and supplemented Wilson’s diet with Neocate to ensure he received enough nutrition. Finally, he was able to complete a meal that would not make him sick.

Summary: Wilson suffered from severe back pain and vomiting because of a milk protein allergy. After unsuccessfully trying other formulas, Wilson tried Neocate. Only Neocate, a nutritionally complete formula, allowed Wilson to be able to have a full meal without screaming in agony.

“It was a true gift to see him start feeling better and become a happier child.”

Education: Over 40% of infants with gastroesophageal reflux also have cow milk allergy.6

6 J Allergy Clin Immunol. 1996 Mar; 97 (3): 822-7

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Testimonials — Metabolics

Picture Perfect Living with PKU — Dustin

I am 27 years old, living with PKU, and tomorrow I am competing in my sixth Triathlon. I drink XPhe Maxamum, in order to maintain the daily dietary vitamins, protein, and nutrients I need to be an athlete and to help myself be the best I can. I also eat a wide variety of low protein foods and products that Nutricia offers. I grew up just like everyone else except I followed a strict diet.  I sometimes take a step back and look at my life and am so grateful that companies like Nutricia North America are providing great products for me and those who have the same condition I do.
I began writing this bio the day before my triathlon and today I sit here to tell you that I beat my previous Triathlon time. I am always seeking ways to continually improve myself and because of Nutricia I can do so.

Dustin
Houston, TX

 
   

Layna pictured above

Picture Perfect Living with PKU — Layna

My daughter Layna has PKU and is 2 1/2 years old.  Ever since Layna has been on her PKU diet I have worried about her drinking all of her milk and almost forcing it on her.  I would get her out of bed in the middle of the night and have her drink it to ensure that she got it in all the recommended amount for the day.  Since we have switched her to Periflex Junior those worries are gone.  She actually asks to drink her formula.  She absolutely loves her formula and I don’t have to worry about her not drinking it all in one day and for that I am very grateful to Nutricia and the great products they provide the PKU community.  
 
Thanks Nutricia!
 
Brandy
Mom to Layna
Jeffersonville IN

 
   

Picture Perfect Living with PKU — Sidney

When we found out that our son was diagnosed with PKU at 11 days old, we had no idea what to expect; that’s when Nutricia first came into our lives. The dietitian recommended one of their formulas.  Shortly after meeting with the doctors we received a welcome package in the mail from Nutricia containing measuring cups, a binder, and all sorts of information about PKU that we could share with family and caregivers. Since then, Nutricia has become a cornerstone in the management of our son’s diet.  He loves the low protein pasta, cookies, cereal, fruity LP bars, and of course his formula. As Sidney grows older, the variety of low protein foods that Nutricia offers will allow him to make choices that promote a healthy, well managed diet.
 
Casey
Mom to Sidney
North Myrtle Beach, SC

 
   

Picture Perfect Living with PKU — John

As a law student, I need to be on top of my game each and every day. Whether I am engaging in lively debate in my classes, reading page after page from my casebooks, or sitting for my ‘marathon’ three-hour essay exams, I have to be sharp and functioning at my best. That is why I rely on Nutricia’s XPhe Maxamum to get the protein I need. Everyone with PKU will agree that when the Phe levels rise or the protein consumption slumps, simple daily tasks become much more challenging. That is certainly not something that I want happening when my grade is on the line, nor when I am participating in my other favorite past-time, running.
 
Everyone knows that before a long run, it is best to load-up on carbs. But when the distance you are after is 26.2 miles—a real marathon—carbs will only get you so far. Eventually, your body demands protein. I learned this lesson the hard way at the San Diego Marathon, and as they say in running parlance, ‘bonked’ because of a lack of protein. The next time around, at the Marine Corps Marathon, I loaded up on Nutricia’s XPhe Maxamum and ran fast enough to qualify for the Boston Marathon. Unfortunately, that marathon fell on the same day as one of my law school final exams. Oh well, at least I had my XPhe Maxamum for the exam, and there is always next year for the race.  
 
John
Arlington, VA

 
   

Picture Perfect Living with PKU — Sean

My name is Sean, I’m 34 years old, was diagnosed at birth with CPKU, married with 3 kids (ages 4 to 1) with another due Nov. 2008, and last year was able to go back “on diet”. My wife suggested I get XPhe Maxamum Drink because she knows I like the flavor and it’s easy to drink.  With kids I don’t have time to drink a gallon of formula, and with this I can stick them in the diaper bag…no need for large containers and a scale. Since being on the XPhe Maxamum Drink my levels have been amazing…4.6! I hadn’t had levels like this in almost 10 years.  I have more energy, better concentration, and a much better memory now...than I did when I was 18 years old. My wife and I have also noticed that my irritability issues are almost non existent, and not a single panic or anxiety attack since starting the XPhe. I am able to focus on what really matters to me…my family! Now all of the new memories can now be remembered by everyone…including me!
 
Sean, CPKU
Scottsville, KY

 
   

Picture Perfect Living with PKU — Breanna

From a young age drinking my formula has always been hard.  Not only did I find mixing my formula inconvenient, I couldn’t find a formula that tasted ok. For a few years I used the Phlexy-10 bars and the Phlexy-10 drink mix.  When we discovered these products I went from a child who hated even thinking about formula, to constantly having my bars and tropical drink mix with me.  The bars were convenient and I took them to school to eat as a snack.  Drinking the tropical drink made it easier for me because the powder came pre-measured.
 
In 2006, I discovered the XPhe Maxamum Tetra Paks and I continue to drink both flavors today.  Not only are these very convenient, the majority of my friends do not know they are my formula unless I tell them, because they look like regular juice boxes.
 
In additional to helping me, Nutricia has helped my sister Erica (10) and will help Genavieve who was born this past July as they both have PKU as well. Our family eats a lot of pasta-based foods.  Because of Nutricia’s Loprofin pastas we are able to enjoy the same foods as our family.  I am very grateful for the products that Nutricia has created!
 
Breanna, CPKU
Franklin, WI

 
   


 

Testimonials — Neurology

Carson's Story

In January of 2007, we took our 5-month old daughter, Carson, to Johns Hopkins Hospital because she was having what appeared to be seizures. Twelve hours, a spinal tap and an EEG scan of her brain later we were told that she has a rare form of Epilepsy called "Infantile Spasms". There are no words to describe the emotions we experienced upon hearing the news that our daughter had about a 20% chance of recovering. Fortunately for us, Johns Hopkins has one of the best pediatric epilepsy programs in the country so we were immediately seen by specialists who have hands on experience with this rare disorder. We were offered multiple forms of treatment, including a regiment of steroids called ACTH, Vigabatrin, Topamax and a more radical approach that Hopkins happens to specialize in called the ketogenic diet.

Since Carson's Mom, Gerry, was perceptive enough to have caught the subtle changes in her behavior in the first week, the doctors told us that we not only had the option of trying the diet before the drugs, but that it also had a better chance of working. If her condition had gone untreated for a few more weeks (as many do) we would have had to move straight into the medication but then we would have also had to simply deal with the lasting side effects that the drugs can cause. Carson was admitted to the hospital on a Saturday; she began fasting on Sunday and had her last seizure on Tuesday night. Carson came home from the hospital on Friday of that same week and continued the diet for 8 months. After her 1st month on the diet, the EEG scan of her brain had almost completely normalized other than some slowing in the left temporal lobe. After her 2nd month on the diet, her EEG was perfectly clear. We are overjoyed to report that Carson is now developing normally and continues to be seizure free.

-- More information at www.carsonharrisfoundation.org

 
   

Katie pictured above

Katie's Story

“Katie was not born with a seizure disorder. She acquired one,” says Melrose, Katie’s mother.

In January 2005, Katie, an honor student and elite athlete, came home from swim practice with a headache. Within 24 hours, she developed a 104.5 degree fever. After the fever subsided, Katie insisted on going back to school, which is where her first grand mal seizure occurred. She was rushed to the hospital and diagnosed with viral encephalitis as her brain began to swell. The doctors called Katie’s situation “very grave” and weren’t sure she would even make it through the night.

To control the seizures, she was put into a medically induced coma. Several attempts to bring her “up” failed. After 35 days, the doctor made a medication change that stopped Katie’s brain from seizing, finally allowing her to come out of her coma.

Six weeks later, her seizures began again. Over the next year and a half, Katie was on seven different anti-seizure medications. But she was still suffering from nearly 50 seizures a month.

“We knew we were dealing with a very difficult situation, and we were told that there would only be a 5% chance that any other medication would be effective in controlling Katie’s seizures,” says her mother.

That is when Katie and her parents began researching the ketogenic diet. Impressed with the initial studies, they took Katie to the Epilepsy Unit at the Children’s Medical Center at the Medical College of Georgia. At 19, Katie was the center’s first ketogenic patient.

The diet soon began to work. Katie’s monthly seizure count went from 6-12 a month to 1-3 a month.

Recently, the family discovered KetoCal, which has provided Katie with more food options, including blueberry muffins and pancakes.

“Just those two foods make a world of difference to her,” says Katie’s mom.

Using the ketogenic diet has dramatically reduced Katie’s seizures. Though certainly not the easiest diet for a busy 19-year-old, she makes it work. And the results are definitely worth her effort – she has gone from 50 seizures a month to less than three a month.

Katie’s life has changed dramatically in the last year and a half. She is not away at college on a swimming scholarship like she had anticipated. But she has a full, rewarding life, thanks to the ketogenic diet. She takes classes at her local college. And she is back in the pool, working with children with disabilities in the Adapted Aquatics Program at her neighborhood YMCA.

Although her life is not what she expected, Katie’s mother says, “she is most determined to continue to live her life and accomplish her goals, and we have no doubt that she will.”

 
   

Delaney's Story

Three-year-old Delaney Frohock was born with Agenesis of the Corpus
Callosum, a congenital condition that can leave its victims handicapped for life.

As recently as August 2005, Delaney had been having long seizures, and had been hospitalized15 times within eight months. Typically, she experienced 10 seizures per day, some lasting as long as two hours. She could no longer hold her head up, she was losing weight and eating became impossible. She needed to be in a wheelchair so that she could be held upright. Her condition did not improve after being put on multiple anti-seizure medications.

The Blue Bird Clinic at Texas Children’s Hospital initially diagnosed Delaney as failing to thrive, and placed her on a feeding tube in August 2005. Within a couple of weeks, they initiated the ketogenic diet and prescribed KetoCal. KetoCal, manufactured by Nutricia North America, is a nutritionally complete medical food that is indicated for children with intractable epilepsy on the ketogenic diet.

Delaney’s condition improved dramatically and her seizures dramatically reduced in frequency and duration. At the first month check-up, Delaney’s seizures were reduced to seven per day and after the next month, they ceased completely. She also was able to stand up and make eye contact.

In February 2006, food was reintroduced orally and Delaney began taking half of her intake orally and half through her feeding tube. In May 2006, her EEG reading showed no seizure activity.

Delaney Frohock suffered from multiple long seizures each day, which hampered her growth and development. After being placed on the ketogenic diet and prescribing KetoCal, Delaney’s condition dramatically improved. She has not had a seizure since January 2006, and her health care providers and parents credit the ketogenic diet and KetoCal.

-- This information is provided with consent from the Frohock family.

 
   

Charlie's Story

"On March 11, 1993, I was pushing my son, Charlie in a swing when his head twitched and he threw his right arm in the air.  The whole event was so subtle that I didn't even think to mention it to Nancy, my wife, until, a couple days later when it recurred.  She said she had seen a similar incident.  That was the beginning of an agony I am without words to describe.

Nine months later, after thousands of epileptic seizures, an incredible array of drugs, dozens of blood draws, eight hospitalizations, a mountain of EEGs, MRIs, CAT scans, one fruitless brain surgery, five pediatric neurologists in three cities, two homeopathists, one faith healer, and countless prayers, Charlie's seizures were unchecked, his development "delayed," and he had a prognosis of continued seizures and progressive retardation.

Then, in December 1993, we learned about the ketogenic diet and the success that Dr. John Freeman and Mrs. Kelly have been having with it at Johns Hopkins as a treatment for kids with difficult-to-control epilepsy.  We took Charlie there, he started the diet.  Charlie is now 15 years old and has been virtually seizure-free, completely drug-free, and a terrific boy ever since."  

- Jim Abrahams, Charlie's Dad; www.charliefoundation.org

 
     


 

 

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