FPIES, EoE, PVL, cyst, mild CP...
Early on... yes, Josiah always loved dogs!
Josiah was born with low tone muscle and always had trouble with swallowing, and later chewing foods. As a newborn, he struggled with nursing, but also choked right away when bottle fed, if the nipple was anything more than the slowest flow. The only brand that worked for him was Born Free. We assumed it was due to his low tone muscle, but when he later was diagnosed with periventricular leukomalacia, and a cyst in his brain, causing mild CP, we figured this was the reason for his difficulty with swallowing. When he was about three, he was officially diagnosed with FPIES, after numerous nights of vomiting. He still reacts with profuse vomiting/acute FPIES reaction from the smallest taste of fish. He is now 12, and the last few years he seemed to struggle even more, spitting out food during every meal, saying it is too chewy, too hard, too stringy... to eat or to swallow. When Evan had an EoE check-up with our new GI at the beginning of the year, he asked if Evan has a sibling. According to new research and statistics, having asthma, allergies, and a sibling with EoE, puts you at 50% chance to also have it. |
Now... Dec 2021
On September 7, Josiah (12 years old) had a procedure with biopsies on his esophagus, stomach, and duodenum to check why he is having trouble with swallowing foods. Not much is known about EoE, so both our kids are enrolled in an EoE research study. The pathology report confirmed strong EoE/Eosinophilic Esophagitis. EoE is diagnosed with a count of 15 or more eosinophils per high-powered microscopic field. Evan’s was 25 a few months ago, and Josiah’s report shows over 50 in the middle section of his esophagus and over 100 in the lower section, which explains his difficulty swallowing foods. He is now on oral liquid steroids twice daily, and will have another biopsy on March 1 to check if it is improving. Without treatment, EoE can cause scar tissue, requiring more invasive surgery.
Mealtime... a challenge.
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Although I know what foods my kids eat and can't eat, or have difficulty swallowing, some foods may work one day and not another day. It frequently happens that they won't eat or will spit out a food they ate the previous time. I consider it a huge exception and success, if I cook the same meal for all and everyone in our house eats it!
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