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.
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.
I recently came across a Japanese tradition in which cracks in broken pottery are filled with gold to repair them. Instead of tossing aside broken dishes, they are celebrated for their unique cracks, a representation of their individual journeys. Instead of discarding them for being different, they are embraced and seen as beautiful. Wouldn’t the world be a much better place if we took this view with our neighbors? Not just those who were adopted, but all of our children. Wouldn’t the world be a better place if they were accepted, flaws and all? If they were appreciated for their differences and their journeys.
Over the past seven years of raising our oldest daughter, we have worked incredibly hard to help her celebrate her differences and embrace the uniqueness of her adoption. The glistening gold that fills those cracks is made up of hours of research and thousands of dollars on specialty therapists to help our daughter process the loss and joy that is her story.
While we celebrate the fact that we found our missing piece, and we try our hardest to instill that mentality in our daughter, the immense loss of losing her birth family isn’t lost on us. Despite being only 10 years old she has had to learn how to come to peace with inner turmoil and conflicting emotions that even I, as an adult, have difficulty processing. She has cried on my lap countless times as she tells me she wishes her birth mom “didn’t have a sad heart” and could keep her. How she wishes she didn’t have to be adopted. In those moments my heart aches for her. As much as I couldn’t fathom a world where she isn’t part of our family, I wish she didn’t have to experience any of the trauma from her past.
Each time she tells me these things, in a complete state of devastation and grief, she feels bad. She feels like she is hurting me, betraying me. She apologizes and says she doesn’t want to go back to her birth family and she wants to stay with us and she loves us and we are her family. Those cracks run deep, almost causing her to shatter into a million pieces.
How could she possibly feel all of these opposing emotions? We tell her that all of these feelings are okay. We tell her not to apologize, we are here to talk openly about everything. We put on a brave face and rock her, soothe her, comfort her, reassure her….and then when we get a few seconds to ourselves, we fall apart.
We grieve for the life she lost.
We grieve for the scars abandonment has left on her.
We grieve for her having to face a world where “different” isn’t always seen as equal.
We grieve for the questions that only grow as she matures.
We grieve for the hurt in her eyes as she watches others say how much her younger siblings look alike.
We grieve as she searches desperately to find some piece of herself in her father and me.
We grieve that she has had to experience cracks at all, and lost some childhood innocence in the process.
Despite all of the turmoil going on in her head, she manages to show pride in her differences. She shows strength. She shows immense empathy. She shows compassion for others. She shows maturity beyond her years, after all, she has had to conquer mature topics at such a young age. Despite how well she seems to grasp her history, with each stage of mental development she needs to reprocess her story on a new, deeper level.
Recently, this has meant identifying with songs that focus on being a “misfit” or “outcast”. She says that the songs describe her because she is the one who is different from the family. With her long golden hair and bright blue eyes, her features don’t match the rest of our family’s brown eyes and dark hair. We focus on the similarities between her and her siblings, how much she has a fire in her like her father. We focus on how advanced she is in math and science just like her dad and how she has the same taste in music as me. She says that she is Panamanian, French Canadian and Italian just like her siblings are. She takes pride in family history, culture, food, music and traditions.
Then she heads to school.
She is told that she isn’t those nationalities because she doesn’t share our DNA.
She is told that we aren’t her “real parents” and her siblings aren’t her “real siblings”.
She is told that she wasn’t wanted by her birth family and that is why we took her.
She is told that she doesn’t belong.
You see, I don’t think that *most* of these kids are trying to be hurtful. I don’t expect them to understand. I think, that they have been taught that so much of who they are is based on DNA, that DNA and blood defines them and their family. I don’t think most of their parents would encourage this thought process if they knew the potential it had to hurt others like my sweet girl. However, most families don’t realize the important conversations they should be having with their kids that they are missing.
Many families don’t teach their kids that families come in all different types. From two dads or moms. Single parents. Living with grandparents. Adoption. Foster Care. Divorced. Separated. Half siblings. Full siblings. Or siblings that share no blood at all. Families come in infinite configurations and it is time to have those open conversations.
Let’s teach our children that not every child grows in their mommy’s bellies. Some grow in their mommy’s hearts.
Let’s teach our children that different does not mean less.
Let’s teach our children that not understanding a family unit does not mean they should look down on it.
Let’s teach our children that adopted children were wanted. They were chosen. They were the missing piece a family was desperately searching for.
Let’s teach our children that adopted children are with their “real family”. They may have a birth family, but the family who loves them, provides for them, fights for them, cheers for them every day…that is their REAL family.
Let’s teach our children that not every adopted family looks the same. There are open adoptions on great terms, closed adoptions and so many more. No single type is better than others and all of them present unique benefits and challenges.
Let’s teach our children that it is okay to ask questions, but take no for an answer if the subject is too personal. I know our girl LOVES educating others on adoption. She loves sharing how unique and special it is that her family is different. However, she doesn’t like to go into details of why her situation is the way it is. She doesn’t like to share the trauma and that is why I won’t share those details here either; it is her story to tell.
She will gladly explain that her siblings are her “real siblings”. They fight with and for each other. They love each other deeply. They play together and know every little detail about each other. They share cherished memories of childhood.
She will explain how we are her “real parents”. We love her unconditionally. We cheer her on. We are always honest. We discipline her. We give her chores. We provide financially, physically and emotionally.
She will explain how yes, she doesn’t share our nationalities by blood but she shares the love of the culture. She listens to stories from our family histories, her family histories. She dances to Spanish music with her dad. She is learning the family meatball and sauce recipe from me that has been passed down for generations. She knows our traditions like our Sicilian seafood feast on Christmas Eve. She appreciates the languages, the foods, the music, the history. She is as much a muddled mix of cultures as our other children.
When I look at her face, I don’t see myself as a child. I don’t see dark hair and dark eyes, but I see so much more. I see her soul. I see the strength, determination, intelligence, curiosity, passion, fire, empathy, compassion, morals, sass, work ethic, sense of humor, strong will, thick-hardheadedness, and quick wit that is very much a mixture of her father and me.
So I beg you, have these conversations with your children. I can promise you they won’t be as difficult as you may think. In fact, I can promise you they will be far easier than it is for parents like me, who must attempt to put the pieces back together after their child has been shattered by hurtful comments. As we attempt to use gold to mend their broken hearts and help them see their unique beauty.
We seek to raise our daughter with peace and acceptance from her past, and my biggest wish for her is that she is able to hold onto that when the world tries to take it away. I pray that she is able to remember each and every crack and appreciate the beauty and journey that they represent.
“Not flesh of my flesh, nor bone of my bone, but still miraculously my own. Never forget for a single minute, you didn’t grow under my heart but in it.” – Fleur Conkling Heyliger
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.
