Jacob & Lili

Jacob & Lili

Thursday, February 28, 2013

A Little Too Comfortable

It's taken me some time to write this update. We had had high hopes that Jacob would pass his dairy trial and that there would no long be a need for his feeding tube. We had gotten used to not having to administer feeds four times a day, every day. We had an almost normal life again. I was back in the gym, back in yoga, getting my life back. We had grown too comfortable with success.

When it came time for Jacob's endoscopy and biopsy for dairy, he was having no symptoms that we could identify. He was swallowing his foods, his stomach seemed okay and he wasn't complaining of pain. We decided to go down for a clinic visit with the allergist and GI two days before the scope. During this visit we told them how well things had been going and they were both very excited by Jacob's prospects. The GI told us that he would not pull his tube right away, just in case. Turns out, he was right. Then we talked to the allergist. After talking with her about Jacob's unusual reactions to dahl and grapes, she said that she is pretty confident that Jacob not only has EoE but also has FPIES (Food Protein-Induced Entercolitis Syndrome). You can learn more about FPIES at http://www.kidswithfoodallergies.org/resourcespre.php?id=99.  This makes sense. It explains why he will sometimes have immediate pain, clearly not an EoE reaction.

The day of the scope was filled with excitement. We went through the routine and left him in the OR. About 30 minutes later the GI came out with news. Jacob's esophagus was developing furrows. Initially, the furrows were not obvious, but as blood started to run down his esophagus from the biopsies, the blood followed the path of the furrows making them more visible. My heart dropped into my stomach. I wanted to scream. His feeding tube would remain indefinitely.

The biopsies results were just as bad, reflecting the furrowing that was occurring. We decided to let Jacob finish out the weekend with dairy. Sunday was deemed "Say goodbye to dairy day". He ate ice cream and yogurt and drank chocolate milk all day. His reaction, though, took me by surprise. I fully expected  a screaming little boy, hysterical and not to be calmed. But instead he remained calm. He was upset no doubt, but handled himself fairly well. I believe, he knew that dairy wasn't good for him. Somehow he knew. So we said our goodbyes and started back on the journey. 
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).
- See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf
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). - See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf
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). - See more at: http://www.kidswithfoodallergies.org/resourcespre.php?id=99#sthash.fQJtgdPX.dpuf

2 comments:

  1. Hi Malisha, I stumbled upon your blog and it really moved me. I can see that you are already involved in some facebook groups related to eoe. There's one more group that you might want to join. Chinese herbs for allergies. This group is a group of patients of dr. Xiu Min Li a famous researcher from Mt. Sinai hospital in NY. She also sees patients in her private practice and treats food allergies and eoe using traditional Chinese medicine. People from all over the world come to see her, maybe she can help your son too. Join our fb group for more info. All the best to you!

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The Maupin's

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