Day and night with my FPIES/&EoE child…
2019 (Evan 7 yrs old)
2019 (Evan 7 yrs old)
- Rejoicing over every moment and every year Evan has lived, and every food I can add to his safe list.
- Spending more time cooking and baking for Evan, than for the rest of the family.
- Housework taking much more time due to extras I need to do because of the FPIES, EoE and IgE allergies, hence less time and energy to read with the kids, play with them, doing artwork with them...
- Using separate pans,dishes, and utensils for my FPIES child, and a designated counter space in the kitchen only for him. Separate cupboard and space in fridge, for only his items. Those should never be touched with contaminated hands or other foods!
- Keeping a space and chair at table, that is only his. Wiping that area with a separate kitchen cloth.
- Rinsing dishes well before putting them in the dishwasher.
- Washing my hands about a 100 times per day, to avoid any contamination between other food and his food or non-food areas, like before touching the kitchen drawers or cabinets or fridge handle.
- Only allowing food in kitchen and at dining table, nowhere else in the house, and asking everyone to always wash hands after touching food, before touching anywhere else.
- No eating allowed in our yard or porch, or in the car.
- Wiping dogs mouth after he eats his meals in the kitchen, and wiping his paws every time he comes in.
- Changing other child's clothes much more frequent, when food gets on there, hence many more loads of laundry. At least 6 loads of laundry weekly from our two boys, and the washer is two floors down.
- No eating out.
- Skipping parties and most social events, as their is usually food involved, hence feeling somewhat withdrawn socially.
- Eating lunch at home, instead of mingling with friends.
- Homeschooling (was told by a school nurse that they would not be able to keep him safe, even with a one on one escort).
- Never leaving the building when he has choir rehearsal at church or piano lessons.
- Wiping off his seat and surrounding area well, and covering his seat with our own cover, before he sits down when we fly oversees to visit family.
- Taking his cans of EleCare and safe foods along when we travel.
- Avoiding overnight stays if at all possible, except at grandparents, otherwise paying extra for more cleaning and bring along his own bed sheets, pillow, and wipe off areas in room before he touches furniture, beds, lamps...
- Still checking on him several times at night, and using video monitor.
- Always keeping epi-pens/auvi-q's close by.
- Making up new recipes with safe foods.
- Spending extra time to find certain foods, some of them only available online.
- Skipping women's conference or any get-away, because I need to take care of my child.
- Being thankful that he's made it this far without a feeding tube.
- Thankful that his daily dose of oral steroids could be reduced to half, without increasing inflammation of esophagus.
- Thankful to friends and family who are willing to meet up and socialize without food involved.
2013 (Evan as a toddler)
· Always watching my little boy to make sure he does not touch or put anything in his mouth that causes reactions, and sometimes it still
happens.
· Being on the watch that my older toddler does not give him anything unsafe; when he would love to share his food with his brother.
· Making sure my older one only touches his sibling and the toys with clean hands, as well as everyone else.
· Keeping Evan out of the kitchen, since there is a chance of crumbs being on the floor, especially before clean-up after meals.
· Washing my hands over 10 times in 15 minutes, out of fear that I pass on anything unsafe to my little one.
· Doing several hours of extra skincare on my boy, when he has itchy eczema from foods, to avoid cracking, weeping skin and bleeding sores.
· Explain allergies and allergens, FPIES, and contamination to his two years older brother.
· Vacuuming, vacuuming, vacuuming, so no crumbs or dirt is on the floor that he will want to put in his mouth, which may cause more reactions.
· Doing extra loads of laundry, because of the diarrhea and vomiting.
· Spending hours and hours on the phone: ...to have his hypoallergenic formula paid by insurance and reordering every three months, and to receive
approval for certain appointments, and to find out if any of his ‘safe’ foods are possibly cross-contaminated, or to search for a place that
sells his foods, or to schedule appointments… and so many times being put on hold, when my boys need attention.
· Numerous trips to grocery stores and markets, trying to find food he can eat, and enquiring about it, when they don’t carry it.
· Doing a joyful dance with my boys, when I find one of the foods locally, and don’t have to order it online.
· Reading labels, and more labels… and more labels, to make sure it is safe for Evan.
· Staying up late at night to read up on FPIES; doing research and feeling overwhelmed, when I need to decide what food to trial next.
· Extra hours in the kitchen to prepare the few safe foods in every possible way to add variety.
· Overwhelming fear during the first few hours, when giving a new food, praying that there is no allergic reaction.
· Relieved when the first few hours are past with no reaction, after giving him two teaspoons of a new food.
· Celebrating with tears of joy when we can add a new food to the list of safe foods!
· Frustrated that so many foods have corn, rice, soy, dairy, potato, citric acid, oils… as ingredients.
· Skipping sleep to find new recipes and to make changes to other recipes with the foods that are safe, and to update my little one’s food journal.
· Packing up his homemade meal and personal dishes to take along, when we don’t eat at home.
· Never a break from cooking.
· Always hoping he likes his food and does not want ours.
· Constant wish that he could eat more different foods, and needing patience with the slow trialing of a new food.
· Wishing he was only allergic to 2 or 3 foods.
· Communicating online with other moms whom I have never met, but who have become my friends; they are my FPIES and EoE support.
· Ready to jump out of bed at night, when I hear him vomiting.
· Always listening and worried, when his breathing sounds different.
· Even checking on him, when he is sleeping quietly, making sure he is fine and not lethargic.
· Frequently wondering why he is crying and crying at night, sometimes every hour: Is it a reaction to something I fed him or something else he
swallowed or touched, or is it due to teething, an upset, bloated tummy, being hungry because he did not want to eat his finger food, or does he
just want to be held…
· Never leaving him in a different room, unless he is sleeping and I am listening through the monitor.
· And yet, being thankful that he does not have more severe health issues.
· And yes, thanking God that he is such a happy child with lots of smiles, who loves to move and enjoy life!
· Always watching my little boy to make sure he does not touch or put anything in his mouth that causes reactions, and sometimes it still
happens.
· Being on the watch that my older toddler does not give him anything unsafe; when he would love to share his food with his brother.
· Making sure my older one only touches his sibling and the toys with clean hands, as well as everyone else.
· Keeping Evan out of the kitchen, since there is a chance of crumbs being on the floor, especially before clean-up after meals.
· Washing my hands over 10 times in 15 minutes, out of fear that I pass on anything unsafe to my little one.
· Doing several hours of extra skincare on my boy, when he has itchy eczema from foods, to avoid cracking, weeping skin and bleeding sores.
· Explain allergies and allergens, FPIES, and contamination to his two years older brother.
· Vacuuming, vacuuming, vacuuming, so no crumbs or dirt is on the floor that he will want to put in his mouth, which may cause more reactions.
· Doing extra loads of laundry, because of the diarrhea and vomiting.
· Spending hours and hours on the phone: ...to have his hypoallergenic formula paid by insurance and reordering every three months, and to receive
approval for certain appointments, and to find out if any of his ‘safe’ foods are possibly cross-contaminated, or to search for a place that
sells his foods, or to schedule appointments… and so many times being put on hold, when my boys need attention.
· Numerous trips to grocery stores and markets, trying to find food he can eat, and enquiring about it, when they don’t carry it.
· Doing a joyful dance with my boys, when I find one of the foods locally, and don’t have to order it online.
· Reading labels, and more labels… and more labels, to make sure it is safe for Evan.
· Staying up late at night to read up on FPIES; doing research and feeling overwhelmed, when I need to decide what food to trial next.
· Extra hours in the kitchen to prepare the few safe foods in every possible way to add variety.
· Overwhelming fear during the first few hours, when giving a new food, praying that there is no allergic reaction.
· Relieved when the first few hours are past with no reaction, after giving him two teaspoons of a new food.
· Celebrating with tears of joy when we can add a new food to the list of safe foods!
· Frustrated that so many foods have corn, rice, soy, dairy, potato, citric acid, oils… as ingredients.
· Skipping sleep to find new recipes and to make changes to other recipes with the foods that are safe, and to update my little one’s food journal.
· Packing up his homemade meal and personal dishes to take along, when we don’t eat at home.
· Never a break from cooking.
· Always hoping he likes his food and does not want ours.
· Constant wish that he could eat more different foods, and needing patience with the slow trialing of a new food.
· Wishing he was only allergic to 2 or 3 foods.
· Communicating online with other moms whom I have never met, but who have become my friends; they are my FPIES and EoE support.
· Ready to jump out of bed at night, when I hear him vomiting.
· Always listening and worried, when his breathing sounds different.
· Even checking on him, when he is sleeping quietly, making sure he is fine and not lethargic.
· Frequently wondering why he is crying and crying at night, sometimes every hour: Is it a reaction to something I fed him or something else he
swallowed or touched, or is it due to teething, an upset, bloated tummy, being hungry because he did not want to eat his finger food, or does he
just want to be held…
· Never leaving him in a different room, unless he is sleeping and I am listening through the monitor.
· And yet, being thankful that he does not have more severe health issues.
· And yes, thanking God that he is such a happy child with lots of smiles, who loves to move and enjoy life!