Food Allergy Living Blog Tagged Results

Our post today is a guest blog entry from Lorelei Alvarez, one of the founders of the Reflux Rebels, a support group for parents of children with reflux, MSPI and other GI issues. You can also find the Reflux Rebels on BabyCenter, where they have an active group of over 1,800 parents. We’d like to thank her for guest blogging for us.

Roland Edward Alvarez

Born December 6, 2008 Roland is an 18 month old toddler who is now perfectly happy and healthy (although fairly small for his age). To be around him now, you would never know the rough start he had in life or the struggles that he still has with certain foods. Due to a traumatic delivery, Roland spent some time at birth in the hospital. He wasn’t able to nurse, and was tube-fed pumped breastmilk. Within just a few days, he began showing signs of dairy protein intolerance, including excess fussiness and gassiness just after eating, arching, vomiting, mucus in his stools and diarrhea. His mom eliminated dairy from her diet and that seemed to improve his condition some and he started gaining a little weight. After a couple weeks, Roland was weaned from the tube and sent home. Unfortunately, once at home, his symptoms continued to get worse. He had difficulty gaining weight, vomited after most bottles of expressed breastmilk, had constant mucus in his stools, frequent diarrhea and it was often extremely acidic. He had frequent weight checks with his pediatrician, and was diagnosed with reflux at around 4 or 5 weeks and started on Zantac, which did nothing to improve his symptoms. In the mean time, his mother started researching about milk protein intolerances and discovered that many babies with issues with milk are also soy intolerant so she eliminated all soy from her diet as well.

Roland at 3 months, Pre-Neocate

Unfortunately, the elimination of soy did little for Roland and his overall health continued to decline. He began projectile vomiting after every bottle of pumped breastmilk and the acidic diarrhea became constant and multiple times each day. In desperation, his mother attempted a total elimination diet, eating only a handful of different foods and eliminating all possible allergenic foods. Nothing seemed to work for poor Roland.

Not All Hypoallergenic Formulas are the Same

His mother’s supply of breastmilk began to dwindle, and it became necessary to supplement with formula. His parents first tried a hypoallergenic formula. Roland was just a little over 3 months at that point and weighed less than 8 pounds. After less than a week supplementing with Nutramigen, Roland took a turn for the worse. He began completely refusing to eat other than in his sleep, vomiting everything, losing weight, having horrible, acidic diarrhea up to 10 times per day and had blood in his stools. His mother again researched and discovered that the hypoallergenic formulas do contain dairy proteins even though they are very broken down and learned about elemental formula through Nutricia’s website and through moms with a group called the Reflux Rebels. Roland’s parents took him once again to the pediatrician and during that visit, it was decided to move him completely to an elemental diet. Roland began a Neocate only diet at a little over 3 months along with a PPI to heal the damage from the reflux and vomiting. Within 2 weeks of the Neocate, most of Roland’s lower GI issues resolved. His stools became fairly normal, gassiness and painful stomach cramping began to clear, and chronic diaper rash began to clear. And, he finally began gaining weight. He remained small, but at least began following the growth curve.

Roland at 5 months, Post-Neocate

Food Protein-Induced Entercolitis Syndrome (FPIES)

The elemental formula likely saved his life, as it became clear later that Roland probably suffers from a condition known as FPIES (Food Protein-Induced Entercolitis Syndrome). Usually this syndrome doesn’t really become clear until solids introduction, but unfortunately Roland’s condition was severe enough that he reacted to the proteins in his mother’s milk. Solids introductions for Roland were difficult and he reacted to several other foods including rice and corn. Eventually he was able to handle very broken down dairy proteins and could tolerate first the hypoallergenic formula and eventually a toddler formula that is not quite as broken down. His issues with soy are less severe as well. Fortunately for Roland, FPIES reactions are typically outgrown around age 3, but until he is able to tolerate the whole proteins in dairy, soy, rice, and corn, his parents need to monitor his diet closely to prevent horrible flu-like reactions. After about 6 weeks on the elemental formula and PPI, Roland went from an exceptionally uncomfortable, clingy, miserable infant who never smiled or slept to a completely independent, fun-loving, easy to care for baby. It was literally a night/day transition. His parents were also able to take him off of the reflux medication fairly early as his issues with reflux and vomiting were due to the protein intolerance. Unfortunately for Roland, living the first 4 months of his little life in chronic pain created an oral aversion that has continued well into his second year of his life. Eating is generally a struggle for him and could be for years.

- Lorelei Alvarez

Roland today at 18 months

Most people believe that a product labeled as hypoallergenic will not cause an allergic reaction, but is this really true?

The definition of hypoallergenic is that a product is unlikely to cause an allergic reaction or will cause fewer allergic reactions. Unfortunately, there are few FDA standards that regulate the use of the term, so it’s hard to determine which products are truly hypoallergenic.

With infant formula, things can get confusing because there are several different types that claim to be hypoallergenic. One example is hydrolysate formulas. Although they claim to be hypoallergenic, the protein in these formulas is only partially broken down and allergic reactions can still happen.

To distinguish them from hydrolysates, amino acid-based formulas like Neocate are sometimes referred to as “super” hypoallergenic. This is because they are made up of individual non-allergenic amino acids.

As the parent of a child with food allergies, it is important to ask yourself, “What makes this product hypoallergenic?” before giving it to your child. One thing that the FDA does require is a list of ingredients on the product label. So be sure to read that ingredient list carefully and look out for potential allergens.

One other thing that you may want to consider when choosing a medical food (such as specialized infant formula) is how much it has been tested. With medical foods a manufacturer is only required to have 29 consecutive patients tolerate the formula in a trial and then they can claim it is hypoallergenic. And if the trial fails the first time, they can repeat it again until they reach 29!

Have any other questions about hypoallergenic products? Ask away!

- Sarah

I’m excited to let everyone know about a new product Neocate just launched called Neocate Nutra – the first hypoallergenic semi-solid medical food for children and infants over 6 months of age. The product is great as a snack for a toddler with cow’s milk allergy and also for transitioning infants onto solid foods.

To learn more about the product check out the product description on the Neocate Web site. Do you think this is a product that will be useful for children with milk allergies? We’d love to hear your thoughts. Let us know by commenting on the blog, or join the discussion on Facebook by visiting Neocate’s Fan Page.

- Sarah

Here’s an interesting article from the Potomac Gazette about a Maryland food allergy family that nicely highlights the need for better diagnosis of infant milk allergies.

However, I wish the reporter would have explained further hypoallergenic formulas and the differences between hydrolysate formulas and elemental formulas. In the article, Victoria Goldberg, mother of two boys who were allergic to milk as babies, mentions that the hypoallergenic formula she gave her oldest still caused a reaction. That’s likely because it was a hypoallergenic hydrolysate.

Hydrolysate formulas (i.e. Nutramigen, Alimentum) contain protein chains that are partially broken down, which makes it easier to digest than typical baby formula. However, sometimes that’s not enough. Some babies need elemental formula (i.e. Neocate) that contain individual amino acids (the building blocks of protein) instead of protein chains.

I think understanding this distinction is key – especially since it can mean the difference between a sick, miserable baby and a happy, healthy baby.

- Nita

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.

For more information on formulas, check out this blog entry that my fellow blogger posted a few months ago.

And if you think your little one might have a milk protein allergy, but hasn’t been diagnosed yet, make an appointment with your doctor and check out http://www.testforallergy.com/ — it’s a good educational resource for potential allergy parents.

Any questions? Let me know!

- Nita