It's Kavya's story now.
She is a sweet little girl who grew up as a mommy's tiny treasure with her relishing side of shyness & charm. We don't exactly remember when it started. It must be after their first birthday, when she got severely sick in India. Later, she wasn't able to eat or swallow solids without gagging & choking. Her throwing up had become a part of her daily routine! Sometimes she even throws up 10 to 12 times a day without any known reason. She looks tired & lethargic most of the times. She never showed interest in any kind of food & feeding times were a big struggle. Even if left for a whole day, she would remain starving the entire day. She gets sick with fever or cold accompanied by vomiting throughout the month. She was also diagnosed with Reflux (acidity in adults) & she had wheezing last winter. She underwent numerous scans with all possible specialists & even an endoscopy was done only to find out nothing was wrong. She was on all wrong medicines just to find out if anything is making things better. Everything went for vein. It is very common for children with this condition to struggle to get a proper diagnosis, and most children are misdiagnosed with stomach bugs first.
The day that changed Kavya's life...
Once she had 'tofu' which is made with soy. Exactly after 1.5 hours she started throwing up continuously for more than an hour & became very sleepy & tired. We just thought it was her usual vomiting. After couple of weeks, the feeding specialist told us to do trials with the foods starting with eliminating diary from her diet to see if any change is making her better. That's when we switched the cow's milk to soy milk for her. Exactly after 1.5 hours of having a cup of soy milk, she reacted in a way we've never seen her before. It was a continuous non-stop throwing up for more than two hours & finally she collapsed & became pale. When we were trying to take her for emergency (luckily) she came to her recovery before entering the hospital & started drinking liquids. So we came back, but couldn't figure out what just happened to her. With the help of a friend, we figured out the symptoms could possibly be FPIES ( Food Protein Induced Enterocolitis Syndrome). It's hard to get it, right? Initially it was hard for us too. Everything she told about FPIES was just overwhelming.
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. When infants who are ingesting a problem food (usually milk or soy-based food) 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. 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, which in some cases can lead to sepsis-like shock. The most definitive test is a medically supervised oral food challenge (OFC)-where the suspect food is given to the child in a controlled clinical environment. The good news is that kids outgrow FPIES mostly before the age of 5 :-). Until then, we have to keep Kavya safe from her trigger - 'soy' which she was taking in small amounts every day all these days. Nowadays we travel around with a letter from our specialist explaining her condition so that when she has another severe reaction it explains to the personnel in the emergency department what is going on and what treatment is needed. This should be very helpful.
Unfortunately, soy is found in most of the foods including cookies, bread, cake & many other common foods. Fortunately, it became possible to give her a soy- free food by checking out the ingredients of every pack, providing a special soy free snack to her school & choosing a soy free diet while eating at restaurants. After couple of weeks of completely eliminating the traces of soy in Kavya's body, miracles happened in her life. She started eating without chocking or vomiting, her appetite increased significantly & she asked me for food for the first time :-). She wasn't lethargic anymore & became super active like any other toddler. Her reflux symptoms vanished & she's now leading a medicine free life after a very long time :-). Now, I just couldn't get my eyes off my little girl eating & eating throughout the day. I hope all her struggles & pain she underwent finally has come to a full stop! I was desperately waiting for this day when Kavya would stand before us with all her smiles & a strong heart bearing all her life experiences.
