Thank you so much for doing this amazing spotlight. My husband Adam and I were fortunate after years of trying to be blessed with two sweet little babies, Reagan (4.5 years), and Wyatt (2.5 years). We live in Utah, and I have been blessed to be a stay at home mom, while Adam works full time as a computer engineer and going to school full time. Our son Wyatt was diagnosed with a very rare disease called FPIES (Food Protein Induced Entercolitis Syndrome) and a differential diagnosis of EoE (Eosinophilic Esophagitis). He also suffers from severe GERD, and Asthma. Our life is crazy, and hectic, but it is beautiful, and we love it. Our children have each taught us such amazing and beautiful lessons, and helped us grow into better people. Thank you for taking the time to tell Wyatt's story.
Miggy: Jessie, thank you so much for participating in today's spotlight. I'm am eager to learn more about Wyatt's condition and to help educate my readers about this rare condition as well. First please tell us about FPIES--what it is and how it affects your son. Does it affect different people in different ways? Can you tell us about treatment and long term prognosis?
Jessie: FPIES stands for Food Protein Induced Entercolitis Syndrome, which in short is an allergy that effects the Gastrointestinal Tract, and the immune system. It causes extreme vomiting and diarrhea until the body goes into shock, extreme lethargy, dehydration, pale skin, and sunken eyes. There are two types of FPIES, classic (acute), and Chronic, and some kids experience both, like my son Wyatt. FPIES is a delayed reaction from 1 hour on, and even a small crumb can send kids into life threatening shock and sepsis. Some children are only effect by a few foods, and some like Wyatt are affected by hundreds.
The treatment and diagnosis of FPIES are tricky, because there is no "test" for FPIES, traditional allergy tests do not show FPIES allergies, so doctors have to go off of patient history, and watching reactions. Most cases of classic FPIES resolve by 4 years old, but the more serious cases, and most Chronic cases take much longer to resolve if they do. The most standard treatment is elimination diets, special Amino Acid Based formula, carefully trialing food, and in some cases feeding tubes, or TPN (Total Parenteral Nutrition).
Wyatt's prognosis at this point is not great. He will likely struggle with food for his entire life. He is on the rare side of this rare disease in that he does not have any safe foods right now, and reacts violently to literally everything. He will likely not fully outgrow FPIES and is considered by his doctors FPIES plus, because there is something else there making him sick, that we haven't discovered yet. Our doctors believe it is EoE (Eosinophilic Esophagitis) plus FPIES, but we are waiting on firm confirmation.
FPIES is a life threatening and dangerous allergy, but it is often misunderstood, and very rare, so it is not known by most doctors.
Miggy: When did you first learn that Wyatt had this condition? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Jessie: Wyatt struggled from his very first day of life, and his relationship with food. He would vomit (projectile) every single thing that went into his mouth, and screamed constantly his first 2 years of life. We saw doctor after doctor, and it wasn't until he was 23 months, and I took some info I found online from The FPIES Foundation (fpiesfoundation.org) after a google search of his symptoms to our family doctor, that we were able to have him diagnosed. She sent us to a new Allergist and our Regular GI doctor with the Info, and he was diagnosed 2 weeks before his second birthday. At this point, he had spent his entire life considered FTT (Failure To Thrive). It was such a bittersweet moment the day we received his official diagnosis. I remember when I did that google search (which I had done at least a million times before), and reading the definition of FPIES, tears streaming down my face, and thinking, "This is Wyatt, this is my boy!" I knew without a doubt that this is what was plaguing him. I read more, and searched more, and then I started to get scared. I saw these really sick kids, some sicker than my own boy, and I as badly as we needed a diagnosis for him, I didn't want it to be something so rare, with no cure. I got involved in the Facebook groups for FPIES, and met some incredible moms that get me through our hardest moments with this. The day our Doctor called after his second scope to rule out a few different things and said to me "Jessie, I am positive Wyatt has FPIES" I lost it. Finally, we had a name for what was happening to our boy. He had a name for what was plaguing him, and we could explain it to people, and doctors would know what to do for him. Now, I do not live in fear. I have anxiety from it, and I worry so much, but I know what is wrong with him, and we finally have good doctors who can help us.
Miggy: Explain how Wyatt's needs affect your day-to-day life.
Jessie: Wyatt is our first thought. In every single thing that we do, he comes first. We don't eat together as a family any more, we eat in shifts, so that he does not feel like he is being punished by having to be alone in a room while we all eat. I don't cook very elaborate meals anymore, because the time, and attention belong to Wyatt more than our food. We never go out to eat, and we don't do many celebrations with family. It's amazing how much in our world involves food. We have learned that environmental factors make him react majorly, and we have cut out wipes, soap, lotion, chapstick, and make him a special laundry soap. He has to use special water, and we take his formula with us no matter where we go.
During the winter months, we do not leave our house, and skip church, and most family activities, so that we can keep Wyatt healthy. He does not sleep for more than a few hours at a time, so we have had to adjust our life around his schedule. He sees a team of 6 specialist, and has 3 therapists that he sees weekly. Our lives revolve around his doctor and therapy schedule. We don't have play dates, and he will never go to the Nursery or Primary in our church, preschool, and will most likely be home schooled. Our daughter Reagan who is Wyatt's older sister has to skip dance, church, preschool, and kindergarten next year, so that any germs she would get there won't make him extremely ill with his already compromised immune system. Wyatt is very rarely without his mom, and Reagan spends a lot of quality time with her grandparents when Wyatt is ill. We have had to really rely on our extended families for support.
Miggy: Like you said, you've had to change your life and even your expectations of what your life would look like dramatically. I admire your strength and commitment to do so. I love that you don't have family meals anymore so as not to make Wyatt feel excluded. At the same time it must be really hard not to do so many 'normal' family activities. What coping strategies do you have to help offset these challenging circumstances? What do you do to recharge your batteries? Any advice to other mama's in a similar circumstance?
Jessie: Meal time was a hard thing to change, because we have always eaten together. It's easier to break up meal time when we are at home, and much harder to do when our extended families gather together. At Thanksgiving this year, I played legos upstairs with Wyatt while my husband and daughter ate with his family, and then my husband Adam switched me after he made sure our daughter was fed. We have started to adjust our approach to gatherings that revolve around food, we go late, or leave early, or make sure that Wyatt and one parent spend time doing something fun in a separate room.
Our families are very understanding and we try and plan things with them not involving large groups or food. And we have gone back to a simpler way, doing more just us, and playing games, watching movies, or going for drives and walks.
In a time where all of our friends have their children in dance, and preschool, playgroups, and going on weekly dates, we have had to adapt and get creative. Usually one of us gets take out while the other puts the kids down, and prays that Wyatt stays in bed for an entire episode of The Big Bang Theory while we eat a taco together, and if he doesn't he joins us, and we make do.
I have mandatory naptime on Sunday afternoon. It's pretty much the only time that I have just to me, and to recharge. Unfortunately, it doesn't always happen, but I make a conscious effort that it does. It's how I get through the week. I also try and lay down and sleep while Wyatt does, because it is rare, and we both need it. So most of our life is planned around his sleep. I will cancel pretty much any activity if he falls asleep.
I would suggest to other moms to find people that are understanding and supportive. That don't judge them or don't try and understand, and let go of the rest. Explain to those closest to you that you need them to be understanding, and try and work with you so you can still have a relationship with them, and to get involved in support groups of your child's struggle, because you won't find more understanding and loving friends, and they will often be the ones online at 3 am when you are in a panic and can help you through. Some of my best friends and greatest allies I will probably never meet in person, but I would really be struggling without their support.
Miggy: What are the biggest worries you face for Wyatt?
Jessie: My biggest worry for him is that he won't ever get better. It's such a scary thing, to not know if your child will thrive. I worry daily about him reacting, because it wracks his body, and takes him months to recover from the smallest reaction.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Jessie: I never imagined that I would turn into the poop detective. Never in my life did I imagine my phone would be filled with pictures of poop, and most of the conversations I would have with my husband, mom, and my friends would revolve around poo. I've had more than one person look at me like a nut job when I am inspecting a diaper before tossing it in a public restroom, or worse when I save it, when there is clearly a garbage close by to toss it in.
Miggy: How can people best approach or respond to Wyatt? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Jessie: I wish that people wouldn't always say "He looks fine to me" To me that is one of the most hurtful things, because it completely invalidates his struggle, how strong he is, and how much he has been through. He is a strong, happy boy, but his life is very hard, and he is in constant pain. I wish that people would understand that this is not the same as being allergic to grass, or choosing to be gluten free. This is something that effects our entire family, and is life threatening to him. And I wish that people would first think about how they would like people to respond to them in a similar situation before speaking. Is it kind? Is it necessary? Is it helpful?
Miggy: What is the biggest lesson you’ve learned since becoming Wyatt's mom?
Jessie: The biggest lesson I have learned is to just let it go. I worried so much what people thought or said before I had him, and I put up with people who were unkind and judgmental because I didn't want to hurt their feelings. I do not have time for that now, and I don't have time to be upset at stupid people. I learned to better let go of the things that are not meant for me, and the people who were not supportive or helpful. I've had to let go of expectations I had set for myself, for my kids, and what I thought our life would be. And I have had to learn to really live in the moment, and celebrate every single day.
For more information on FPIES, please go to: fpiesfoundation.org
You can learn more about Wyatt, and his FPIES on his blog at hopeforwyatt.wordpress.com
Thank you so much Jessie! Wow... I remember listening to a podcast once about parental love featuring some children with severe mental and emotional issues. At the beginning of the show the host basically said it was time to "listen to some stories that will make your job as a parent seem easy." Jessie, your situation with your sweet Wyatt makes most of our jobs as parents seem easy. I know that you're doing what most parents in your shoes would have to do, but your fierce dedication to Wyatts physical needs as well as his emotional well being is inspirational. And I love what you said about letting go, living in the moment and celebrating every single day. Thanks again and much love to you and your sweet family.
As always if you or someone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a fantastic weekend!