Peyton's Journey with FPIES and Fructose Malabsorption: June 2011

Monday, June 6, 2011

Reflections on When it Really Started

January, when Peyton turned one, everything really started to get bad. Due to his milk and rice "sensitivities", his pediatrician recommended that we see the pediatric allergist before completely weening him from the formula to make sure there was no other foods that he had allergies to. The only one that came back positive was the rice, and he only was reactive on the skin with that, not in the blood tests. So the allergist diagnosed him with the FPIES, trigger foods milk and rice. With that his pediatrician told us to go ahead and start weening him to soy milk, and then when we could try getting him off his reflux meds.

Peyton on his First Birthday (Jan. 19th)

WARNING: Graphic discussion on Peyton poop!

Around this time, he started to have stools that were looser than usual. The more food we introduced, the more food he ate, the less formula he had, he went from 4 loose stools to 8, and then to 8 diarrhea per day. The diarrhea was not normal. It was like water with mucous and chunks of food in it. It smelled like the most rancid, sulfuric stench that you have ever smelled (you could be in the living room and him in the family room and know that he had just pooped). He had no fever. He didn't fuss much. He slowly began to get irritable, his legs were stiff and he would clench them up against his body when we held him. He was clingy. He started to go into almost like a fog. He would observe, but not interact as much as he used to. He became clumsy, regressed back to his "ohh's and ahh's" instead of the da, ma and ba sounds he had been doing so well on. He didn't smile as much. He just wasn't Peyton.

The problem was as his mommy and daddy, we were with him everyday and we just didn't see all of this all together and were so focused on the diarrhea. We couldn't even see the dramatic weight loss, the pale skin, the circles under his eyes.

Peyton in February (Feb. 3rd)

One Friday night in February, about three weeks after the diarrhea went up to 8 times a day, Meghan was at the women's candlelight dinner at our church with Peyton's aunt Julie and Grammy. Both of them made comments to her about how Peyton looked like he was loosing a lot of weight, his eyes had circles under them, he was pale, and just didn't look healthy. After they said this, Meghan took a good look at him and sure enough, even though we see him everyday, we didn't see how sick he really was until then.

Peyton on March 10th

What is FPIES?

FPIES is Food Protein-Induced Enterocolitis Syndrome. It is commonly pronounced "F-Pies", as in "apple pies", though some physicians may refer to it as FIES (pronounced "fees", considering food-protein as one word). Enterocolitis is inflammation involving both the small intestine and the colon (large intestine).

FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside. (Note: Having FPIES does not preclude one from having other allergies/intolerances with the food.) The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.

A child with FPIES may experience what appears to be a severe stomach bug, but the "bug" only starts a couple hours after the offending food is given. Many FPIES parents have rushed their children to the ER, limp from extreme, repeated projectile vomiting, only to be told, "It's the stomach flu." However, the next time they feed their children the same solids, the dramatic symptoms return.

What is Fructose Malabsorption?

Fructose malabsorption occurs when the amount consumed is more than can be absorbed by the small intestine. Unabsorbed fructose acts as an osmotic load with rapid movement into the colon, which can cause diarrhea. Bacterial fermentation of fructose in the colon results in gas formation and other gastrointestinal sympotms, such as abdominal pain, bloating, and nausea. This is not to be confused with Hereditary fructose intolerance, a rare genetic disorder caused by the lack of a liver enzyme that converts the storage form of glucose into glucose. (we have not yet determined which of the two Peyton suffers from only that he cannot tolerate fructose).

Symptoms of gastrointestinal distress occurring 30-180 minutes after consumption:
Abdominal pain, belching, bloating, flatulence, diarrhea, hausea, and tummy rumbling, depression, anziety, fatigue, headache, brain fog, either aversion to sweet-tasting foods or craving for sugar, weight loss and irritability.

Since fructose causes diarrhea, it flushes out some micronutrients from the small intestine before the are absorbed resulting in anemia and various other nutrient deficiencies.