Food Allergy Living Blog Tagged Results

Our post today is a guest blog entry from Lynda Mitchell, the Founder ofKids With Food Allergies Foundation. We'd like to thank her for guest blogging with us. 

As the parent of a baby who had multiple food allergies, I truly understand the joys and challenges of parenting a child with food allergies. My baby - now 21 years old - is successfully attending college, living a full life, and managing his own food allergies.

As the founder of Kids With Food Allergies Foundation (KFA), a nonprofit grass roots support organization for families raising children with food allergies, I want to assure you that you are not alone, and want you to know that there is a world of support waiting for you.

KFA offers daily assistance and practical food allergy management help. Reach out to us when you're just getting started. We can help you not feel alone, give you pointers to make your life easier and help improve the quality of life for you and your child. Or, if you've been "in the trenches" managing food allergies for a while, you are welcome to get involved and share what you know with others who are new to food allergies, stay informed with news, or get involved with volunteer work or leadership opportunities.

Our website is rich with resources to help you day-to-day. Most of this information is fully accessible without cost to you. Please check out what we offer, and use what is helpful!

Looking for social support?

Our online support community of 24,000 members is the largest online peer support group focused solely on children's food allergies. Registration is free-so if you haven't already become a member, please join us and participate in sharing support, exchanging information, and giving and getting help with food ideas, recipes and cooking challenges! In addition to general forums, there are places to discuss special issues, like raising children with eosinophilic gastrointestinal disorders, food protein-induced enterocolitis syndrome (FPIES), celebrating birthdays and special occasions (Yes, we can even help you bake your child's birthday cake!), and lots more!

New to food allergies?

Check out our free e-book starter guide, From Confusion to Confidence, and our online tutorial and videos. We also offer a one-page handout with need-to-know information focusing on prevention and preparedness.

Need help with grocery shopping, food ideas, baking, cooking or recipes?

Check out our label reading guides; basic substitution and "How to Cook" information; grocery shopping tips; and Safe Eats Recipe Database. We also offer twice-yearly reports on new allergy- and kid-friendly foods; an Allergy Buyer's Guide; and food and cooking support forums where you can ask other parents for tried-and-true suggestions.

Looking for help navigating holidays, school, travel or special occasions?

Check out our holiday guides, school resources, travel and camp tips! We've got lots more to offer too. So, visit our website soon, become a member and sign up for our free news updates! Find us on Facebook and follow us on Twitter. We're here to help inform, connect and support families. I hope we can be of help to yours, too.

Lynda

FPIES, or food protein induced enterocolitis syndrome, is a condition that I’ve been hearing about more and more lately. It is not particularly well-known, so I thought we could cover some of the basics in today’s blog.

What is FPIES?

FPIES is a disease that typically affects infants and young children. While it can mimic food allergies, the difference with FPIES is that it is a non-IgE mediated immune reaction in the gastrointestinal (GI) system to one or more specific foods. This means that the IgE antibodies associated with other food allergies are not involved in an FPIES reaction.

Cow’s milk and soy are the most common FPIES triggers, but ANY foods can cause an FPIES reaction (even ones that aren’t typically considered to be allergens like rice and oats).

Common Symptoms of FPIES

Most FPIES reactions happen when a child is very young – just a few weeks or months old. Often it happens when the first formulas or solid foods are introduced (breastmilk doesn’t usually cause an FPIES reaction, even if the mother has eaten a trigger food).

Each child is different, but the most common symptoms of FPIES involve the GI tract and can include projectile vomiting and diarrhea, which means that it is often mistaken for a stomach bug. There is almost always a delayed onset of symptoms - often vomiting occurs 2 hours after eating a trigger food, with diarrhea following 5 hours after eating. Some children experience relatively mild symptoms, while others have such severe vomiting and diarrhea that they can become seriously dehydrated and go into shock.

Diagnosing and Treating FPIES

It can be difficult to diagnose FPIES because blood allergy tests only look for IgE-mediated responses. Usually a diagnosis occurs after repeated reactions. Keeping a food journal may be helpful in identifying triggers if you think your child has FPIES.

Treating FPIES varies depending on the child, their triggers and reactions. For infants with FPIES an elemental formula like Neocate is often used. For some children who have fewer triggers treatment is simply to avoid those foods. Introducing new foods slowly – one at a time and for up to three weeks – is extremely important to identify both safe and trigger foods. If your child has an FPIES reaction, it is important that they remain hydrated to avoid going into shock.

Outgrowing FPIES

Many children with FPIES outgrow the disease by age three, but this can vary based on how severe their symptoms are and which foods they react to. According to an article from Kids With Food Allergies, one study showed that 100% of children with FPIES reactions to barley had outgrown and were tolerating barley by age three, while only 40% of those with FPIES to rice, and 60% to dairy tolerated it by the same age.

To determine if your child has outgrown FPIES it is important to work with your doctor and evaluate it on a food-by-food basis. Atopy patch testing can help assess if your child is ready for an oral challenge in your doctor’s office or hospital (do not attempt without a doctor’s supervision!).

We hope this helps shed some light on an often confusing disease. If any of you have children with FPIES and can share your experiences, please leave a comment!

- Sarah

Many of you have little ones who suffered for weeks, months or even years before finally getting a diagnosis. The diagnosis may have been a food allergy, gastroesophageal reflux disease (GERD), an eosinophilic disorder, food protein-induced enterocolitis syndrome (FPIES), multiple food protein intolerance (MFPI), or a similar allergy-related condition. The diagnosis explains your child’s symptoms and helps you manage them. Although you were likely relieved to have an answer and appropriate treatment plan, many of you were probably still left with many questions.

Research has given us many answers in recent years but there are many questions that still remain. Why did my child develop this condition? Is there any way to prevent this condition? What are the chances that siblings will develop the same condition? Is there a way to actually cure the underlying condition so that my child can eat a normal diet? The best way to get these answers is to support clinical research. There may be a research study on your child’s specific condition at a facility near you. Enrolling your children is the best way to get closer to the cause of these diseases and hopefully someday, the cure.

Finding a Clinical Trial

It’s easy to find trials on the U.S. National Institutes of Health (NIH) website: http://www.clinicaltrials.gov. Here are some clinical trials (which are seeking participants) that may apply to your child’s condition:

• Food allergies;
• Eosinophilic disorders;
• Infants and children with GERD;
• Pediatric inflammatory bowel disease;
• Short bowel syndrome in children; and
• General studies on pediatric allergic disease.

Obviously, pediatric allergic diseases are getting more and more attention from researchers. By joining a clinical study, you can help strengthen the research and do your part to help find answers. You can refine your search for a clinical trial by location so that you can find a clinical trial near you. You can even see a list of studies on a map.

Questions You Should Ask Before Enrolling in a Clinical Trial

Before you enroll your child in a clinical study, it’s important to understand exactly what a clinical trial is. Here are the answers to some questions that you might have. Chances are that you may be a little wary about signing your child up to be a “guinea pig” for science. And that’s okay; it’s your job as a parent to be careful!

You should make sure that you get all the facts before you decide to participate. The National Institutes of Health actually has a website dedicated to clinical studies for children that provides information and guidance for parents. For example, they provide a printable document (http://www.nhlbi.nih.gov/childrenandclinicalstudies/downloads/english/pdf/questions_to_ask.pdf) with questions that parents may want to ask when considering enrolling their child in a clinical study. Once you get all the information, your family can decide if participating in a clinical trial is right for you.

Have any of you participated in a clinical trial in the past? What has your experience been? Would you do it again?

- Mallory

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