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Reshearch for FPIES

Organized by: Samantha Hooley

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THE STORY:

FPIES is/can be a very serious condition/disease that is rare enough that there is very little reshearch and knowledge of it. The FPIES organization is ready to do reshearch and help the many family's that are effected by it. They need $500,000 of funds to start the reshearch and they expect it will take another 6 years to achieve that goal! As a FPIES mom i want to help them acomplish their goal sooner than expected. So many families would benefit knowing the cause of FPIES. Here's a little info on FPIES: Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Many times it is over looked and parents are told their kiddo has a stomach bug. FPIES Common Symptoms: There are two ways that infants or children with FPIES might come to medical attention. The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea.  The child may appear very ill and sleepy (lethargic), and may become pale or blue.  When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis.The second common pattern of FPIES reaction symptoms occurs when infants who are ingesting a problem food (usually milk or soy-based formula or proteins in breast milk) as a consistent part of their diet might experience increasingly severe vomiting, diarrhea, and poor growth, possibly progressing to an illness mimicking a severe total-body infection. Please note that each child is unique and your child may experience their own range and intensity of these symptoms. FPIES Treatment and Course: FPIES reactions can be severe. It is important to get to prompt medical attention where treatment, such as fluids given into the vein to help stabilize blood pressure and treat dehydration, can be given in order to avoid sepsis-like shock.  Although some doctors prescribe epinephrine to stabilize blood pressure before medical treatment, the main therapy is to get intravenous fluids; also steroids can be used to quell the immune reaction. Preparing a letter for potential trips to the ER, containing both FPIES information and a list of your child’s triggers, may be helpful. Unfortunately, there are currently no simple tests for FPIES.  The primary test, as mentioned above, is a medically supervised oral food challenge with the trigger food.  The good news is that FPIES usually resolves with time.  Your child will need to be closely followed by his/her doctor to discuss what foods are safe to eat and when it may be time to determine if FPIES has resolved.  With proper medical attention and a personalized dietary plan to ensure proper nutrition, children with FPIES can grow and thrive. About FPIES © is a written collaboration of The FPIES Foundation Board of Directors and The FPIES Foundation’s Medical Advisory Board:  Sakina S. Bajowala, MD;  J. Andrew Bird, MD; April Clark, RD/LD; John J. Lee, MD; Fred Leickly, MD, MPH; David R. Naimi, DO; Harumi Jyonouchi, MD; Scott H. Sicherer, MD; Anna Nowak-Wegrzyn, MD. Here is their link if you want more info: http://fpiesfoundation.org/about-fpies-3/ FPIES has mad a dramatic change in our lives and in many others lives. My son is 4.5 years old and since he was an infant we've been told he has a dairy allergy. Eliminating dairy was helpful but he was still sick frequently, always having a tummy ache. Finally in march of 2016 we got a referral to go see an allergist. He was diagnosed with FPIES, at first it was a relief until i realized what it meant for him. So far we have found that his trigger foods are soy, dairy, some gluten, high fructose corn syrup, red and blue food dye, and most anything processed. Thankfully we are not in the shock category of the disease to where he needs immediate attention from a doctor. We do have stomach pains, violent vomiting for hours, loose stools and a very sick kiddo. His basic diet is meat, fruits and vegetables. We cant go out to eat or go get dessert and don't even mention vacation! Almost everything has his triggers as an ingredient. We are lucky, some families have 25 + trigger foods some cant even eat, they can only have a special formulated nutritional drink. Some have to seek medical attention immediately or their sweet kid will go into shock. I had never herd of FPIES until my son was diagnosed and i wish doctors could tell me why he has it, what causes it, how to fix it. But they are just as clueless as us. We need reshearch to be done, we need to find causes and maybe even a cure! All donations go to the FPIES organization to fund reshearch.

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Organized by

Samantha Hooley

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