can you help me here

Did they mention anything about Food Protein Induced Entercolitis Syndrome (FPIES)? That is what my dd was diagnosed with. She was on only neocate until just a few weeks ago (around 16 months old). That is the best solution…NO OTHER FOODS! I know it will be tough but it is the best if that is what she has. Addy ate 7 ozs every 3 hours of Neocate from 7 months until 15 1/2 months and if tylenol is needed, do only dye free…the less added things, the better.

Try doing a search here of “FPIES” for other posts about that.

Good luck and I hope you find some answers! Email me at tracy t williams @ gmail.com (without the spaces) if you want.

addysmommy2007-5-20 12:22:13

FPIES-

What is the Food Protein Induced Enterocolitis Syndrome?

Food protein induced enterocolitis syndrome, or FPIES, is a disease of infants and young children that mimics food allergies. Symptoms typically include vomiting, diarrhea (sometimes bloody), dehydration and low-blood pressure. The child or infant can appear lethargic, and over time can have problems gaining weight. Hospitalization for possible severe infection in common in children with FPIES.

Symptoms of FPIES typically occur shortly after consuming the culprit food. Vomiting starts within 2 hours after eating the causative food, and diarrhea typically starts within 5 hours of eating.

While FPIES can mimic food allergies, symptoms typically only consist of gastrointestinal symptoms, and other body organs are not involved. There is no skin involvement in FPIES (hives/swelling, itching), and no respiratory symptoms (runny nose, sneezing, coughing, or wheezing), which are commonly seen in true food allergy. And, typical allergy tests to the causative foods are negative in FPIES.

What Foods Cause FPIES?

The most common foods implicated in the cause of FPIES are milk and soy formulas. However, solid foods can also cause the problem, most commonly cereal grains (oats, rice, barely), legumes (peas, lentils, beans) and poultry (such as chicken and turkey).

Foods that are typically tolerated by children with FPIES include breast milk and hydrolyzed casein infant formulas (such as Alimentum).

How is FPIES Diagnosed?

FPIES is typically a clinical diagnosis made by having a history of symptoms consistent with this syndrome after eating suspect foods. An allergist may perform allergy testing to ensure that true allergy is not present. There is typically no need to perform an oral food challenge in young children to prove that foods are causing the symptoms, and this can be extremely dangerous.

How is FPIES Treated?

Avoidance of the suspect foods, as well as other foods that commonly cause the disorder, is the mainstay of therapy in children with FPIES. If the child has FPIES caused by a cow’s milk based infant formula, soy formula should also be avoided, given that soy can also commonly cause this syndrome. Avoidance of cereal grains, poultry and legumes is also recommended. Most fruits and vegetables are not causative foods and are typically tolerated in children with FPIES. Learn more about avoidance of specific foods.

Once symptoms do occur, treatment should be sought in an emergency room given that children may develop low blood pressure along with vomiting and diarrhea. It is recommended that the diagnosing physician (usually an allergist) write a letter explaining that the child suffers from FPIES, and the recommended treatment course if there is an accidental ingestion of the food. The child should be monitored for a minimum of 4 hours after eating the culprit food, as it may take this long for symptoms to occur.

Once symptoms do occur, intravenous fluids and steroids are typically required. Injectable epinephrine is not typically needed but may also be given, along with other injectable medications if the child’s blood pressure remains low.

At What Age Does FPIES Resolve?

Typically, FPIES resolves by age 3, meaning that the child is likely to be able to tolerate the culprit foods after this age. However, parents should not attempt to determine if the child can tolerate the food at home. Rather, an allergist may choose to feed the child the culprit food under close medical supervision, such as in the doctor’s office or in the hospital. It is recommended to perform these oral food challenges with an intravenous catheter in place.

Are There Other Non-Allergic Diseases Caused by Foods that Mimic FPIES?

Another food-intolerance, called dietary protein proctitis, is characterized by blood-streaked stools in very young infants, usually starting at 1-2 months of age. These children do not have vomiting, and otherwise appear well. This food intolerance is often related to cow’s milk or soy formulas, or due to the presence of milk, soy or egg protein in breast milk. These children typically can tolerate the causative foods at about 1 year of age.

Dietary protein enteropathy most closely resembles FPIES, with children experiencing vomiting, diarrhea and difficulty gaining weight. These children lack severe symptoms of lethargy and low blood pressure. Symptoms begin in infancy to 2 years of age, and typically resolve by 3 years of age. Culprit foods include cow’s milk, soy, cereal grains, egg and fish.

http://allergies.about.com/od/foodallergies/a/fpies.htm

nataliachick72007-5-20 11:57:8

Hi Sarah. Welcome back…

I’m sorry you need to be here. Sounds like you have your hands full with two little ones with reflux/food issues only a year apart!

I have a few questions for you. What symptoms more precisely does Maggie have? When and how did you have her tested? She’s still pretty young (7 months, is it?) and I don’t know too much about the reliability of allergy testing in babies that young. How old was your first child when she had her testing done?

When they say “protein intolerant” has she tried any foods or is she purely on neocate? Has she had any testing like an endoscopy done to see if there is damage to her esophagus? Some babies have something called E.E. (eosinophilic esophagitis) which is basically esophageal damage and mimics symptoms similar to reflux, but when they do the endoscopy they can see the damage caused by the allergies.

Good luck. I hope that you can find answers soon. Given the history with your first daughter, I certainly wouldn’t rule out the possibility of allergies at such a young age.

With the skin testing – did you get the print out? They should have measured each welt. They do a *test* welt that has nothing in it – let’s say that measures 2-2. They also do a *histamine* welt that everyone will respond to – let’s say that measures 20-15. Now, let’s say they tested her for dairy and it came back 4-4. That is quite a bit less than the 20-15 but it is not down to what the TEST welt was. Let’s say they also tested for soy and that was 5-1. Same thing again. This is what happened with Carson. The allergist said he is not allergic to those things. The number is not where it needs to be for an allergy. BUT, I KNOW that those things bothered him and he said they very well could show up slightly and be intolerances. With intolerances, the immune system does not get involved so it is harder to detect.

That being said, I would ask for the read out and see how the numbers vary on the skin prick testing.

Carson was tested for celiac but our peds gi specialist said that you have to take a biopsy from the intestine to get a true reading on this. ??Just what I was told??

I hope this helps. Let me know if you got the printout from the skin prick testing.

Gotta get LO ready for bed.

Boy, I can’t believe the welts didn’t read larger than the histamine. Our numbers were up to 44. The Control was around 2-3 or 1-3 or something like that. We must have had different testing done. However, I still can’t believe there were no welts other than the histamine! Carson had a welt for each item. Many of the welts were the size of the control or smaller but he had a welt in each spot. ?? I don’t know what to say and feel so bad for you. Do you think it is just that the reflux is not under control and everything is coming up ?? I know you said she wasn’t refluxing but ?Maybe? With our oldest, he was put in the hosp and under watch for 48 hours – that is how our Peds GI SPec and I met. He said – this kid is refluxing. I just don’t know but I feel so bad for you.

This is how our GI and allergist explained it to us concerning proteins: All foods have amino acid chains in them which are proteins. Amiino Acids are the building blocks of proteins. That is why some kids can’t tolerate any proteins (all foods) except for Neocate or formula like it bc its amino-acid based formula (no whole protein chains). The proteins are broken down already so the body doesn’t see them as offenders.

Sarah: I see that Carson and Cecilia are about the same age and both on formulas yet and both with allergies. I find it so hard to find foods that Carson CAN eat, yet WILL eat. Most of Carson’s calories come from his bottle before bed of Neocate. What do you feed Cecilia?

I think testing (upper GI, ph probe) is the only true way to find out if it is reflux. With Carson, our doc says once the allergies are gone, the reflux will prob be gone also – but you and I know you can’t wait out allergies -that could take a long time.

TnBEich2007-5-21 14:44:55