You stand on the edge of an ocean of uncertainty. The hot sun of anxiety and fear beating down on you. The cold water is refreshing but a shock to your system. As you look out at the water you can’t be sure if the next wave coming in will wash over you like a breath of fresh air, a welcomed relief from the heat or will it knock you down? Will it pull you under and break you? Or just toss you around and spit you back out as a stronger more confident and knowledgeable swimmer? Will it wash up the shore to consume your child? Or will it be just enough to alert help and send reinforcements?
Of course, the type of diagnosis you are seeking will play a roll in the size and intensity of the wave. But no matter what is happening with your child, the unknown of the wave is there. My son has taught me what a strong swimmer I am. I’m a fighter. An advocate. We have had scary diagnoses placed on the table as possibilities. We have seen many doctors and specialists. I’ve held him through countless blood draws, x-rays and testing. So many unknowns remain for our little man and there is sure to be more testing in his future.
I remember the day he received his FPIES (food protein-induced enterocolitis syndrome) diagnosis. I will never forget the details right down to what I was wearing. At first, it was refreshing. Thank God I wasn’t crazy! His bizarre symptoms had an explanation! We finally have a label. I could research and plan. Then the wave pulled me under. Sucked into the pits of Google researching and researching; driving myself crazy to try to make myself the new FPIES expert. Finally, I was spat out. My head broke the surface and I gasped for air. One step led to another and then onto another, and soon I was able to find specialists for his rare disease. The pieces came together. I was able to better formulate a plan for moving forward and take peace in the fact that the scarier diagnoses had been ruled out for the time being.
Not everything goes according to plan. Unfortunately, this process is a cycle. My own demons of anxiety and postpartum depression ally themselves with normal mom fear and create a terrifying all-consuming monster. Each time a new diagnosis is brought up as a potential culprit I have to fight not to be consumed by the undercurrent. I do my best to swim parallel to the shore….toeing the fine line of being prepared for anything and paranoid of everything. I’m sure you know how researching medical conditions can be online, try mixing in some medical anomalies and it can feel like being sucked into the undertow.
Sound familiar momma? Just know this: it will be OKAY.
YOU know your child best.
YOU will always be their best advocate.
ALWAYS trust your gut.
Document everything and don’t stop until you have answers. Feeling crazy? Wondering if you are good enough? I can tell you, if you are worried about being good enough and capable enough to manage your child’s care, then you are already doing an amazing job.
Keep your head above that water. Take care of yourself even when it feels like there is no time left in the day. But most of all, enjoy your child. Whatever their diagnosis is, don’t let it consume them. Don’t let it become their identity. It may be a large part of their life but it is not WHO they are. This is harder than it seems when you are constantly documenting, scheduling and traveling to specialists. But momma…
Notice their unique personality.
Notice their talents, strengths, fears and what makes them let out those irresistible belly laughs.
Notice THEM.
When the world wants that diagnosis to put them in a box and define them, fight to make the world see them for who they are as the incredible tiny human you know them to be.
YOU are their advocate.
YOU are their life jacket, warrior, peace, strength and joy all rolled into one rock-star mom.
You can’t support them if you don’t support you.
Ask for help.
VENT.
Find your tribe, your village, your people and lean on them. Online support groups can be absolutely incredible!
VENT.
VENT some more.
You will get through this wave. There may be more coming but they won’t pull you under. You’ve got this!
Despite the best of intentions, and my own FREQUENT use of these words…I don’t want my medically fragile child described as any of them.
I just want him to be little, and to enjoy that littleness.
I want him to grow up with the innocence that comes from a healthy, carefree, unrestricted childhood.
I don’t want that childhood spent inside the walls of hospitals, doctors offices, and therapies.
I don’t want that childhood spent getting tests done, blood drawn and IVs placed.
I don’t want his memory of my arms to be as restraints for testing and needles. A restraint he tries desperately to escape from.
I want him to remember the comfort and love he felt when I held him. I want him to seek out my arms to embrace him and take the pain and fears away. I want to be his safe place.
I want him to laugh and run at playgroup without fear of foods or germs that will land him in the hospital.
I want to enjoy the highs without feeling like the lows are coming with fury to knock us off course.
I want to enjoy each season as it comes without anxiously awaiting to see what the next one will bring.
Yes, I know.
He IS tough. He IS a little warrior. He IS brave. I know that I describe him as such…but I’ve come to hate these words.
Maybe it’s the week spent in and out of hospitals watching our sweet boy so sick that he couldn’t hold his head up. Watching him so drained of strength that he could no longer fight the blood draws and IVs. Maybe it’s this new perspective or maybe it’s bitterness.
But when I heard these adjectives by well meaning loved ones and nurses, I started to cringe. Each time I began to feel like I was being punched in the gut by an unseen enemy.
You see, when we saw those two lines come up on that test, when we saw blue at our gender reveal, when we heard that first cry…this was not the life we envisioned.
When we describe him as tough or a warrior or a fighter…we are feeding into letting his diagnosis define him. I’m making a vow now to change that.
Instead, I want the focus to be on just how funny, silly, bright, caring, mischievous, loving, curious, outgoing, determined, social, beautiful, talented, cautious, sweet, empathetic, strong willed, sensitive, happy, persistent, observant and absolutely perfect he is.
And if we must use those words, let it be just one, in the long list of other adjectives we use.
“Can we go to the pool/spray park/playground/beach?”
Would it even be summer break without a whole slew of questions before 8 am?! I swear, these girls expect me to be some sort of activity coordinator with new and exciting activities to fill every second of every day. No thank you, minions…not happening.
In the past the solution was simple — GO OUTSIDE!
Sending the kids out to play, spending the day in the pool or at a park. Cheap. Easy. Minimal Effort. BURNS THEIR NEVER ENDING ENERGY! Perfection.
We have been anxiously awaiting the warm weather and have been hopeful that it would also mean the end of all sorts of nasty bugs that have kept us locked away all winter. But, what would life be without a curve-ball….especially with little L.
Cue the apparent reactions to heat/humidity. Who knew?!?!
Now we not only have to account for food/non-food items that will cause FPIES reactions, but we also have to be aware of the heat. Rashes, breathing issues, coughing, behavior changes, GI upset…all things our little zebra has started showing symptoms of when in the heat for a few hours. It was absolutely amazing the difference in him when we finally turned on the air conditioning! No need for the nebulizer, rash almost gone, and no coughing!
So what exactly do we do to keep the Os-lings occupied this summer while attempting to limit heat and humidity exposure?!
Like most millennial moms, I took to Pinterest for activity ideas! Finding ideas for the girls was simple…there were so many we had a hard time choosing! DONE!
However, I quickly became discouraged looking for new and interesting ideas for L. We can’t do play-doh, slime, paint, markers, chalk, etc. due to food sourced ingredients being a part of the recipes and we had to limit outdoor activities. I scrolled and although I did find ideas, it was a lot of trial and error, a lot of thinking things through and coming up with alternative approaches and substitutions. A lot of clicking on articles for “20 best activities” to find one or two before going back to my scrolling.
Dried pasta and beans for sensory bins…nope.
Shaving cream fun…double nope.
Corn starch in homemade chalk paint…no way.
Vinegar in science experiments…no go.
Food coloring for colored water play…not happening.
Playing with spice containers and small pieces…too stressful having to worry about cleaning them well!
I realized that although L is pretty reactive and we play it safe, there were lots of other kids who were worse off. Some react to bubbles, aluminum foil, book ink and more. Before entering the terrifying world of food allergies! Did you know aluminum foil is rolled out in soy oil during production? That chalk and children’s paint may contain dairy? That markers and board book ink can contain soy? There seem to be hidden allergens all around us in forms we would never expect! As if keeping our guy safe didn’t feel stressful enough already!
So, I decided to share the list I compiled of activities for my little guy. These may be new to you or not, but they are in one place and offer fun unique “pinteresty” ideas for allergy kiddos! I know some of these materials won’t work for all allergies but it’s a start! This will be 3 parts throughout the summer, not necessarily 3 consecutive weeks, so make sure you subscribe to the blog so you don’t miss the rest!
1) Velcro Popsicle Sticks:
I love that this one can be altered in so many ways! Matching colors, adding letters for older kiddos, or just sticking and pulling apart as L enjoyed! Super simple to do, just cut velcro pieces and stick them to the ends of the sticks (on both ends and sides). I stuck them all together to start and he enjoyed pulling them all apart and then trying to figure out how to get them to stick back together.
2) Laundry Basket & Tape:
This one can easily be adapted if your kiddo can’t do tape and/or aluminum foil but for L, he needed the additional sensory component. He tends to shy away from certain textures and we are dealing with feeding aversions. Since foods are limited I try to incorporate textures in other ways whenever possible. All you need is some tape and wrap it through the holes of your laundry basket to create a web. If you’re anything like me that means dumping the clean clothes on a mountain of laundry on the couch in order to free up a basket! I used ball pit balls with some balled up aluminum foil for a new texture but anything would work! L seemed only briefly interested but my adorable goddaughter LOVED this one (shameless god mommy plug!). Try adding stuffed animals or countless other possibilities to fit your needs!
3) Pipe-cleaners & Strainer:
I made sure to scrub the h*** out of the strainer before letting him play….but I was still a nervous wreck. He hasn’t seemed to react to small cross-contamination in the past but if your kiddo does, strainers are super cheap at a dollar store. Considering this was one of his favorite activities, I would say it’s worth it! I started with a strainer with smaller sized holes and placed all of the pipe cleaners in it myself before handing it to him.
He absolutely loved pulling them all out but it was a little too tricky for him to thread them back in so we switched to our giant pasta pot’s strainer (again SCRUBBED) which had larger holes. He is always trying to figure things out and has such intent focus on mastering new tasks so this challenge kept him busy for quite a while!
4) Kitchen Whisk & Pom-poms:
I used a rarely used whisk that was scrubbed but I will probably buy a cheap silicone whisk for the future for L. I added small plastic party favor hopping frogs mostly out of necessity to keep the pom poms from falling out but he actually ended up enjoying those the most. They were more challenging for him to get out because the feet kept hooking on the edges. Although he liked this activity, he emptied the whisk quickly and then had little interest in it. This would probably be more entertaining for younger kiddos but I am thinking a larger silicone whisk with varying sized pom poms would be better for L.
5) Formula Can Slots
I don’t know about you, but we always have empty formula cans lying around! I’m sure there will be more activities with these in the future! If you don’t have formula cans any plastic container or box can be used. Hands down, this was his FAVORITE! He walked around with this little can adding toys for over an hour. I started by just cutting slits in the lid and having him place popsicle sticks in. This was too easy, so we moved to pom poms which he enjoyed so much more! We also practiced taking the lid on and off (I’m sure I will regret building this skill!). He loved it so much that he carried that can around his playroom and experimented with different toys. Some fit in the slits but most didn’t and he loved the trial and error search to find things he could collect (including clumps of dog hair and dust bunnies…eek!).
I’m excited to see what other activities we can come up with for the next two parts! I’d love to hear suggestions of things you want to see adapted for your allergy kiddos too so leave a comment if you have an idea! Don’t forget to subscribe as a follower so you don’t miss the rest of the series!
Not quite a full tailspin, but just enough to knock me off course.
We watch our sweet L get sick often. We go to the pediatrician often. We consult with specialists often. This is our normal.
This week I had enough.
This week, I was angry.
This isn’t the normal I wanted. This isn’t the normal I expected. This isn’t the normal our 3 Os-lings deserve.
Sometimes, being told that we need frequent flier points at the pediatrician is enough comic relief to make me smile, to lighten the load of another appointment. But this week, it was almost enough to break me.
Sometimes, being told by medical professionals that our boy is a mystery to them can be taken as a compliment when I seem to understand him so well. But this week, it was daunting.
It seems we can’t go a week without a food reaction, fever, illness, infection or random GI upset. Since September he has faced over 20 fevers, most without known causes. Plus a slew of airway issues including pneumonia, bronchiolitis, and recurrent croup. He’s had a handful of double ear infections. He’s had food fails that lead to weeks of diarrhea and blood in his stool. He’s been diagnosed with reactive airway disorder since he is too young for an asthma diagnosis. He’s had medical testing and countless blood draws. He’s had hospital trips, multiple rounds of antibiotics, steroids and nebulizer treatments. For the rare week when I am not making the trip to the pediatrician, he seems to make up for it with double appointments the following week. Although I am always relieved when a test comes back normal, when another issue is ruled out, I can never quite take a deep breath. I can never quite shake the feeling that some crucial piece of the puzzle is being missed and there is something more we can do. It just can’t be normal for one little boy to be sick this much; to have so many systems in his tiny body work against him. Can it?
This past week I struggled. I struggled to face the fact that our lives aren’t always what we pictured for ourselves. That we have added complications that those around us may not understand. I struggled to explain our boy’s medical needs, repeatedly. I struggled with comments made even if they were with the best intentions. I try to be grateful for others who don’t “get it”, this just means they haven’t had to live it. I try to be grateful for the opportunity to educate others, but it is exhausting to rehash it all like a broken record. This week though, despite the smile painted on my face, I was bitter.
I was not okay.
I struggled to see the silver linings. I struggled to see the blessings. All I seemed to notice was how unfair this hand we’ve been dealt can seem.
I know in my head that as time passes, he should improve. All of the doctors have told us this and the research is there to back it up. In my heart, I dream of the day when these concerns are behind us but dread his growing up at the same time.
So this week I chose to take action. I choose to reach out to all of his medical professionals and see what else we can do. I choose to revel in little L’s sweet smile and big brown eyes. I choose to soak in his sense of humor and vibrant personality.
I choose joy.
In those moments when I feel robbed for losing these precious fleeting moments to anxiety and illnesses, I will choose to be grateful that we have him to hold and love. That we are lucky enough to have this precious boy as our son.
In those moments when I want to scream into my pillow and crawl into bed in defeat, I will choose to pick myself up, put on some music and have a dance party with our 3 crazy Os-lings.
In those moments when I feel the pull of Google and the allure of a research spiral, we will head outside to play away from screens.
Finding the silver lining is hard. It doesn’t come naturally. When you are forced to be the medical advocate for your child, you start to only see the medical issues. This week I am choosing to see beyond that. I am choosing to take our lives, our summer, our fleeting precious time back.
Our little L is so much more than his complex diagnoses and it’s time that our life is too.
The words rang in my ears with no real answer coming to my lips. It wasn’t a question I had anticipated having to answer at L’s specialist appointment. I had prepared for countless other questions for our trip to Boston. Recent fails. Lists of triggers. Symptoms. Passed foods. Feeding aversions. Blood tests. Illnesses. Growth concerns. Next steps. Further testing. Other diagnoses…
But somehow this question left me reeling; such a seemingly simple question, yet a complex answer.
On the surface, his quality of life was great. Sure we had illnesses, food reactions and lots of doctor’s appointments but in all honesty, he was always so happy! He had no idea what he was missing out on because of his FPIES diagnosis. So that’s how we answered, with one simple word: ‘great’.
Over the last few weeks, I have been thinking about this question every day. Haunted by it really….his quality of life was great, but what sacrifices has our family made to give that to him? What happened behind the scenes to ensure our little guy stayed oblivious to what he was missing out on?
In an effort to pull back the curtain, I’ve put a lot of thought into how we ensure that his quality of life isn’t affected. The simple answer? Preparation and planning.
LOTS of it.
There are no impromptu stops to eat while we are out. There are no spur of the moment ice cream pit stops after a day at the playground. Social gatherings require the ever-present helicopter parent; it’s not an option, it’s necessary to ensure his safety. Even eating at home means monitoring safe food inventory and constantly preparing multiple meals and snacks from scratch. To even get to the point of being able to prep food, we have to carefully choose which foods we trial next in an effort to make L’s diet not only varied but similar to ours.
I wouldn’t change any of our work in all honesty. It is out of love that we pour such devotion into the small moments, always thinking ahead to make sure he doesn’t go without. I remember when I first became a mom and it was as if my awareness suddenly opened up, I was aware of my child at all times. Being an allergy mom has awakened true superpowers….seriously!
Isn’t it our job as parents to give our kids experiences, help them learn, have fun, explore, make memories, and live their BEST lives? We willingly make the sacrifices so they don’t have to. But when your child faces any sort of challenge, be it physical, developmental, medical, or any type of food allergy, that job becomes more complicated.
I know more about food chemistry and how food proteins change than I ever would have thought. I know substitutes when cooking that goes beyond the commonly known alternatives. I can do more with just a few safe ingredients than I ever imagined. I can spot dangerous crumbs from across the room. The list goes on.
Sure packing food for the day, for outings or meals out, seems like a small task in itself. But do you see the placemats I bring with us each time to give him a safe eating space? Do you see the package of wipes we go through when we arrive at a restaurant just so we can avoid triggers on the high chair and table? Do you see the constant monitoring as he sits at the table with us? The repeating to everyone “don’t feed L”?
I’m sure some of these things are more noticeable than others. You may understand or you may think we are OCD germophobes and that’s okay. I’m grateful for the confused looks because it means that you have never had to face the struggles and fear we do daily, and I pray you never do.
What you don’t see is how I try my hardest to plan the food I bring him, to resemble (at least on some level), what he will see others eating.
What you don’t see is my stress that if he throws that food on the ground, I will have nothing else to feed him without going back home.
What you don’t see is that I worry not only about his health but about how he will grow up constantly feeling left out. Meal times are an important social time across cultures. We gather around food. Celebrate with food. Share food. Enjoy food. Food in many cultures brings us together and my sweet boy is never fully included in that.
He is still young and often I can keep him happy with a similar enough substitution for him. Whether that is putting his safe yogurt in the same styrofoam cup that his sisters have when we go out for ice cream, or making him his own safe frozen treats the day before I know other kids will be eating theirs in front of him. That may mean that we look for specialized products like carrot spirals so that he can feel like he has spaghetti at dinner like everyone else.
The problem is, as he gets older this won’t always work. In fact, when I posted this exact question about the quality of life to the amazing FPIES support group I’m in, it was brought to my attention that eventually, these simple tricks may not work. What happens when he wants to taste ours because we said it was the same? Or he realizes that in fact, his “ice cream” is the same yogurt he eats daily. That his carrot spirals are not spaghetti but instead are just carrots…again…for the second time today. What happens when he no longer tolerates being confined to his stroller for outings in an effort to eliminate accidental exposures?
For now, we experiment with safe foods. We plan out trials carefully. We plan out his meals to line up as much as possible with ours. We plan our daily activities based on his available foods. We hope, that we can continue to stay one step ahead. That we can continue to plan and prep and tap into that creativity so little L’s quality of life never suffers. That he never has to see that when we go for walks in his wagon in a field, his sisters are gorging themselves on warm freshly picked strawberries. That he doesn’t realize that his “ice cream” was secretly poured into a cup while he wasn’t looking from his yogurt we brought in the diaper bag.
It may be more complicated, more work and more exhausting but it is also more rewarding! When his little face lights up at a new spin on a safe treat, when he feels included in food sharing (even if it is just his safe chips), our hearts explode. In those moments it is all worth it. We know there will be challenges as he grows. That his challenges will change as he does. As he learns that there are foods he can’t have and things he can’t do, we already see glimmers of frustration which in true toddler fashion lead to tantrums. In an effort to protect his little heart and big spirit, we prep, we plan, we research and we continue to be devoted to a GREAT quality of life.
On this FPIES journey with our littlest Osling, the clouds can be overbearing and the silver linings scarce. Through the anxiety, analyzing, waiting, watching, documenting, traveling, prepping and planning so much is missed in day to day enjoyment.
We worry about L’s health but we also worry about our girls. Are they getting enough of us? Are they sacrificing too much because of his medical limitations? Are we missing out on moments with them, despite our best efforts, because of the all-consuming beast that is FPIES?
When we take a minute to slow down, to watch the sibling relationship that has developed since L was born, we realize how much empathy, compassion, awareness and understanding K and A have gained on this journey.
While we seek to raise awareness outside of our family, we are confronted with the harsh reality of ignorance from many. Ignorance of food allergies in general, lack of concern with learning and quite honestly, hostility surrounding changing their actions to keep others safe. While we see so much darkness in the world while dealing with our son’s condition, we are surrounded by so much light from our girls.
Who knew that at just 4 years old, A could successfully list all 13 trigger foods and all 14 safe foods L has, as well as what is on our list to trial next. Who knew that at 9 years old, K would know about cross-contamination, hidden ingredients and the danger of non-food items for L. With each diaper A asks, “is that a sick poop mom or a happy poop? Do you need your phone to take a picture for the doctor?”.
Although I wish that they didn’t have to worry about their brother’s health, I am so proud of their awareness and devotion to keeping him safe. I hope and pray that this commitment to their brother expands to others they meet throughout their lives.
That they learn about all sorts of differences, abilities, challenges, and strengths and seek to help others around them rise.
That they realize that equality and equity are different. Equity doesn’t mean that everyone gets the exact same thing, but instead that each person receives the assistance they need to create an even playing field.
That they internalize that different abilities does not mean less capabilities.
That they find ways to help others the way they help their brother.
That they are willing to make sacrifices to their convenience, for the safety and well being of others.
It’s true that FPIES has taken a lot from our family, but I choose to see all of the blessings it has opened our eyes to, all of the lessons we have learned. Those small changes our family has had to make in an effort to adapt to this new and confusing life, have set the stage for life lessons for our children. For that I am grateful.
Not being able to eat in the living room seems like a small inconvenience but it teaches them not to eat in situations where others suffer from allergies or to make substitutions in the food they chose. They are learning to make sacrifices now to help others. To empathize with those who already feel left out and have challenges to deal with themselves.
Celebrating new passed foods seems like small wins now, but that will translate to seeing each individual’s accomplishments and celebrating just as loudly for others as they do for themselves.
Keeping a watchful eye for crumbs that pose threats to their little L, will transform into looking out for others in their lives and an innate willingness to jump into action when needed.
Understanding that some foods are strictly for L and are not to be shared because his diet is so limited and frankly expensive, will eventually manifest as an understanding that giving help and necessary accommodations to those who need it is not favoritism. Instead, they recognize that having those foods for him is just as necessary as the cabinets filled with food for them. Keeping things “fair” means he gets specialized food and they celebrate that with us.
Recognizing that attention spent on their brother is not attention lost from them. As they grow this will reconfigure into seeing that their strength and ability is not lessened by helping others. Small sacrifices are in fact part of being strong and independent.
Making sacrifices when L is fighting through a reaction and having to adjust all previous plans, will become an understanding of invisible illnesses and disabilities. Understanding that sometimes, we have to adjust to support and be there for those who need us most.
I pray that these lessons follow them. That small seeds have been planted and will flourish over the years. I pray that we can continue to support our little L and become stronger as a family unit while recognizing every fleck of silver lining this journey has brought us. I pray that our daughters look back on this journey with appreciation for the early life lessons they have learned while recognizing that we always tried our hardest to give each of them what they needed. But most of all, I pray that this sibling bond, forged through years of bickering, and laughter, never falters and that they learn to help and rely on one another for the rest of their lives.
Trying to cope to get through a reaction to strawberries.
Nutramigen Formula.
Carrot.
Prunes.
Pumpkin.
Red Apples.
Avocado.
Egg.
Chicken.
Baking soda.
Salt.
Sugar.
Vanilla.
Sunflower butter.
Green peas.
Almond.
White potato.
Strawberry.
This is my 15 month old son’s entire diet.
This is my list of ingredients to use to make as many creative combinations and textures as possible.
This is what he can eat for breakfast, lunch, dinner and snacks. No additional oils, spices, or ingredients of any kind.
A grocery trip for his safes
Oats.
Rice.
Wheat.
Quinoa.
Hemp.
Peanut.
Soy.
Dairy.
Banana.
Sweet potato.
Strawberry.
Green peas.
This is the list of foods we avoid at all costs. No eating out. Very selective brands or prepackaged foods. Lots of research, calling and emailing companies and prep work for every bite my son takes. And to be honest, that’s not many. Hours spent researching brands, experimenting with recipes, prepping food. Money spent on specialty ingredients. But he’s still a toddler. And a picky toddler with food aversions at that. So…most of his food, the food we work hard to prepare, ends up on the floor for the dogs.
Packed freezer after a full day of food prep!… Most will be fed to the dogs
I recite his safe food list and trigger food list countless times to myself throughout each day. To doctors and nurses as they ask “does your child have any allergies”. To other parents I meet who ask “oh is he allergic?”. To myself as I scour ingredients and packages for anything that may hurt my son and make him violently ill.
My brain hurts.
I’m exhausted.
Constantly feeling like I’m forgetting a food on a list. So I recite them all again.
And again.
So many times I open the fridge, to his one little self contained drawer of “safes” and almost…for a split second reach for the fresh ripe fruit right above it. Or the shredded cheese I know would be so fun for him! I almost, ALMOST, just want to test it. What if he’s fine? What if he loves it? What if the worst is behind us?
But then reality kicks in. While yes, the worst may be behind us and yes, he may be starting to outgrow some triggers or at the very least not develop new ones, it’s not worth the risk. The horrific GI pain, the mucus and blood. The bleeding diaper rashes and screaming. The weight loss from reactions. The violent, exorcist style projectile vomiting until his body is completely drained. The risk of sending him into shock.
Failing peanut…
So instead, I make his plate with the plain boiled chicken breast, homemade almond crackers and dehydrated apple. I stick to the safes and hope and pray that whatever food we are trialing this week is a pass.
ACTUALLY eating homemade goodies
Since there is no test yet for FPIES to determine what each child’s triggers will be, we trial foods one by one in a tedious and stressful process. Every oil, spice, additive, EVERY ingredient must be trialed.
I hope that this week will add just one more food to his diet. That we can get one step closer to a normal meal time. All the while watching, waiting, analyzing every behavior change, every hiccup, cough and diaper for a sign of a reaction.
Just one page in our binder for trials. Documenting EVERY symptoms.
The trials should only take 5 days for my son; gradually increasing the amounts over the course of the trial. You would THINK that we would have more foods then right? Every month we SHOULD be able to add about six new foods. Of course, FPIES isn’t that simple.
When he’s sick or teething….we can’t trial.
When he has a reaction we have to wait for him to get back to baseline….and then wait some more. Sometimes getting back to baseline only takes a few days, other times it takes a few weeks.
Once he’s at baseline…we wait another week to start a trial.
With normal toddler illnesses mixed in with fails, it’s easy to see how quickly time passes with no new foods added to the rotation.
The process of deciding foods to trial is just as tedious. I scour resources to see what food families he has had passes in and which he has had fails. Although there is no guarantee, it is more likely he will pass in food families he has safes in already.
Once I pick food families to focus on, I then examine options for nutritional value. Which foods will help him gain weight? Which food gets us closer to cutting his reliance on formula?
Then, I look at our family’s diet. Which foods would help make family mealtimes more of a possibility? How close would this food bring us to actually sharing a meal?
Versatility is a big component I consider as well. Which foods offer the most options? Avocado gives us an oil as well as a high fat food. Almond gives us a flour for baking etc… Since L-Os has feeding aversions this is SO important. The more textures and presentations a food offers, the more beneficial the pass would be!
So many steps just to pick a food to trial. So much prepping, analyzing, documenting, waiting and praying. Holding my breathe hoping for a smooth pass but all the while not getting my hopes up too high. The constant anxiety in the back of my head nagging at me reminding me of the worst outcome we could face but trying, and trying, and failing to stay positive. Watching our sweet boy enjoy something new and exciting, and hoping that this won’t be the last time he gets to eat it.
L-Os’ FIRST potato chip! Who knew I would be this excited to feed my toddler chips?!
Constantly wondering if we are about to poison our son with a food he won’t tolerate.
Constantly playing Russian Roulette with his body.
This is life with FPIES.
Failing green peas…his heated stuffed animal definitely helps get through some GI pain
Follow along on our little man’s journey and learn more about FPIES at his Facebook page Living La Vida Lucca
In honor of National FPIES Awareness Day on May 4th
The moment those double pink lines revealed themselves we were overcome with joy. Expectations, dreams, and excitement surrounded us. Being the third child we would bring into our family gave me confidence. Having previous experience took some of the nerves away. I already knew we would breastfeed, co-sleep, baby-wear, and follow the baby led weaning method for foods. No need to buy bottles. No need to buy special equipment to prepare purees. We had a plan. We had a proven system. The hard part of trial and error testing parenting was over. What could possibly go wrong?
I will admit, I didn’t research much of anything; why would I? I was a pro! The pregnancy was bumpy as I suffered from Hyperemesis Gravidarum (HG), a severe form of morning sickness. This left me bedridden and caused me to lose weight when I should have been gaining. Medications and Powerade were my saving graces. Later in the pregnancy, I was diagnosed with Gestational Diabetes (GD). Unfortunately, because of my HG I was unable to control my GD with diet changes alone which led to more frequent monitoring, non-stress tests, ultrasounds…and more medications. Despite some pre-labor scares and modified bedrest, I counted down to meeting my precious boy and thanked God that he was healthy and we were going to be okay. It would all be over soon and the perfectly messy journey of being his mom would begin.
When induction day arrived I was equally excited to meet our new addition as I was to end this sickness hell I had been living and finally EAT! When his blood sugar levels came back normal and he seemed to take to breastfeeding easily it seemed like smooth sailing from there. He was happy and content; he actually let us put him down to sleep! He was PERFECTION at 7 lbs 14 oz and 21.5 inches!
On our second night in the hospital, he started making an odd gurgling sound in his sleep. We asked nurses and doctors but were assured that these were “normal newborn” sounds. So, we eagerly brought our little guy home and he was greeted by his adoring sisters. Life was beautiful and we were incredibly blessed.
The next day at his pediatrician appointment we found out he had jaundice and a Billie Blanket was ordered for him to use at home. Our little glow worm took it in stride and after a brief scare of his levels not dropping as expected, he made progress and no longer needed the blanket. Now we could finally move on and enjoy our perfect, healthy baby boy….right?
Over the next few months, he seemed to have trouble adjusting to nursing. He would choke and gag frequently. Reflux symptoms worsened with projectile vomiting, arching, screaming and frequent unexplained low fevers. Again, we were told this was all normal. Reflux was normal and since he was gaining weight no medication was necessary. Low fevers were okay, his immune system was just developing.
At his two month appointment, our pediatrician noticed retractions in his breathing but again, since he wasn’t struggling no one was concerned. It was chalked up to immaturity in his airway tissue and he would outgrow it.
A few weeks later, our little man turned blue. Yes, BLUE. He didn’t stop breathing, but around his lips turned a hue of bluish purple. Scary right? Off to the doctor, we went! All the while wondering and anticipating what this could be. A chest x-ray was ordered and a pulmonology referral was given for the next day. We were terrified. His choking episodes continued during feedings and in his sleep, he was turning blue, having retractions and puking and no one seemed to know why. We feared the worst.
The next day our pulmonologist was on point! His chest x-ray was clear! She heard nothing wrong with his lungs and low and behold….she suspected that all of his issues were caused by REFLUX! Who knew?! She was able to pull the pediatric Gastroenterologist (GI) into our appointment and together they developed a plan to start reflux medication, order a sleep study and send us immediately to see a feeding specialist. This is also where my husband’s never ending battle with the insurance companies began.
After a whirlwind appointment, we drove down the road to meet with the feeding team who recommended feeding therapy and a swallow study. We were incredibly blessed to get in with so many specialists so quickly. This is NEVER the way these appointments work. We were even more blessed to be able to have his swallow study and sleep study completed within the next two weeks. After waiting for results and feeling awful for putting our precious baby through test after test, everything came back normal! Although this was a huge relief, we were still terrified. What was going on with our baby?!
A month later, with all of his symptoms continuing despite meds and therapies his pediatrician referred us to cardiology. Let the Google spiral commence. We again were blessed with a very quick appointment and a fantastic pediatric cardiologist who performed an echocardiogram (ultrasound of the heart) at our appointment and again…everything was NORMAL! So why was our precious new baby having such bizarre symptoms?
With everyone stumped, we went back to GI. A 24 hour GI probe study was ordered and we waited. Our little man would have a probe placed down his nose and into his stomach (similar to a feeding tube). This probe was attached to a monitor and we were to input everything into that monitor for the next 24 hours: feedings, positioning, vomiting, and blue spells. Low and behold, his blue spells happened with every acid spike! His GI ordered an increase in meds but seemed disconnected from our little Os-ling’s care.
At his 4 month check-up, we saw that his weight gain was slowing but he had been through so much! We were advised to start solid food, starting with oatmeal cereal. At our follow-up GI appointment, his GI actually FORGOT about all of the testings he had done already. Talk about being frustrated! It was at this point that we made an appointment with a different GI for a second opinion. While we waited for this next appointment we continued feeding him a variety of foods and documenting his bizarre symptoms.
On our family vacation a week later things got even more bizarre. In the middle of the night, our boy woke up vomiting. The only way to describe this episode was like a scene from The Exorcist. Vomit EVERYWHERE. Vomit every 10 minutes. I’m talking the bed, the floor, our clothes, blankets…EVERYTHING was covered. We panicked and called the pediatrician who told us it was probably a stomach bug and to offer small amounts of breast milk at a time and monitor for dehydration. He vomited until it was all stomach bile but eventually kept some fluids down and an ER trip was avoided. Then he slept. He slept most of the next day and only woke up when he had bouts of horrific diarrhea. When we returned home a few days later this scene replayed again and through some miracle, we realized that both nights, he had eaten oatmeal. But oatmeal couldn’t cause that? Could it?
We were advised to stop oatmeal and start rice instead. Cue the awful mucus diarrhea. I know. This isn’t a topic anyone wants to hear about but seriously, it’s crucial. I began to realize after stopping rice that although his mucus situation improved it never really went away. Soon we realized that banana and sweet potato caused GI upset as well. Even worse was the realization that even with no solids in his diet, he would have bouts of awful GI upset from breast milk. Had he ever had diapers without mucus? Surely he couldn’t be allergic to all of these foods! And there was no way he was allergic to breast milk!
The following week we met with his new GI. It was at that moment that things changed. He was diagnosed as failure to thrive and I remember feeling like the ground dropped from beneath my feet. We had done everything we were advised to. We jumped through hoops, ran from doctor to doctor, we did everything. How could he be that small? Was he really that sickly? She advised cutting soy, dairy, and egg from my diet and seeing if that helped him. She agreed the constant mucus was a concern as well as his continued reflux despite meds. She felt strongly though that reaction to all of those foods was highly unlikely because she had never seen anything like it in her career.
As I researched his symptoms I stumbled upon the FPIES Foundation website. Suddenly all of the pieces fell together. His symptoms could all be explained by Food Protein Induced Enterocolitis Syndrome, a rare form of food allergy that affects the GI system with a delayed response hours after ingestion. He could very likely be reacting to all of those foods. He could also very likely be reacting through my breastmilk and even to my breastmilk protein which was causing the severe reflux, leading to the feeding difficulties, blue spells, retractions and failure to thrive.
A week later we saw the allergist and she confirmed his diagnosis, admitting that she had never actually worked with a child with this diagnosis. She completed allergy testing which all came back negative, confirming the FPIES diagnosis. You see, the challenging part of FPIES is that there is no testing. Typical allergy testing doesn’t show what will trigger an FPIES reaction. The only way to know if your child will react is to trial foods. She advised that I start an elimination diet to figure out what I was eating that was triggering his symptoms or that we make the switch to a specialized formula. It was at this moment that I made the difficult decision to stop breastfeeding. Breastfeeding had always been so important to me. I nursed my daughter until she was almost two and I donated over 1,000 ounces of milk to babies in need. Now, I was making the conscious decision to eliminate this liquid gold from my son’s life. I just couldn’t bear to watch him suffer any longer. I couldn’t bear the thought of playing Russian roulette with his GI system with everything I ate as well as his food trials.
We were very lucky that he tolerated the formula well and that his insurance covered the costs after significant battles. I found an incredible support group online and researched until I drove myself crazy. Luckily we were able to find specialty care of an FPIES guru in Boston, not too far from where we live. His diagnosis was confirmed and we were given a plan and instructions moving forward. We have Zofran for home use to help stop vomiting from a reaction. We have a letter to give to ER doctors if we should need IV fluids to prevent shock. And best of all, we have our GI doctors cell number. He is the biggest blessing on this journey.
We are now on 8 months of managing his FPIES care. He has proven to be one of the rare kids who has more than 3 triggers. We have to trial EVERYTHING. EVERY additive. EVERY spice. EVERY possible ingredient or item he could ingest. He currently has 14 safe foods (including formula, salt, sugar, and baking soda) and twelve triggers. Everything he eats is made by me (with the exception of 3 limited ingredient snacks I can purchase). Every brand is researched for cross contamination. Each week is a new trial: documenting, examining, waiting, watching, prepping. He struggles with feeding aversions because of his experiences with food. We can’t share family meals as we planned. He is 15 months and still on formula. He is tiny and his weight is always a concern but we continue to push through…one trial at a time.
Yes, it could be worse. He could have a fatal condition. He could have multiple severe anaphylactic allergies that require split-second responses. We know this. We are grateful that it is not “worse”. But it is important to understand that strain and stress this diagnosis does put on our family, our marriage, our finances, our life. Telling a parent it could be worse is not helpful. His condition is life-threatening. Although his allergic responses are GI related and happen a few hours after ingestion they can be so severe that they lead to hypovolemic shock. Every time we feed him a new food or start a trial we hope for the best but are prepared for the worst.
The silver lining? It is likely that he will outgrow his triggers in a few years. Re-trialing will likely be done in a hospital setting with an IV placed just in case, but there is likely an end in sight. We know this is great news; but it in no way diminishes the tedious, severe and serious nature of his current situation and our family’s journey.
There is little we can control with the hand he was given. There are more diagnoses and medical conditions on the table for him. It will still be a long bumpy journey with specialists and testing. So, I seek to take control where I can. I raise awareness. I write. I share his story; our story. If you are a family seeking a diagnosis for bizarre symptoms, keep looking. Keep searching. Find a medical team who supports you and is willing to walk beside you in the quest for answers. Seek a medical team who believes in the importance of quality of life even if the symptoms don’t seem “serious enough”. Surround yourself with like-minded people: friends, family, a support group.
In honor of National FPIES Awareness Day on May 4th, we have decided to share every tedious detail of his journey. Our hope is to not only raise awareness for his rare disease but to also provide encouragement and support for all families seeking answers and support for their children.
