Archives for posts with tag: FPIES


Life After Food Allergies

Your entire family comes to a halt when your son is diagnosed with food allergies. It’s hard on your son. Hard on you and your husband. Hard on your older son. You micromanage meals. You read every single ingredient on packages. You hesitate before parties. Who is bringing what? “Don’t feed him anything without asking me first.” You want to vomit when you send him off to school, alone. Your new normal causes a cosmic shift at home. You settle into the uncomfortable new normal. The allergy years rage on.

The day comes, the moment you dreamed about. Oral Food Challenge Day. You don’t sleep the night before, tossing, turning, worrying. Certain he will react. Heart races. Sweat oozes. Vomit feeling returns.

You sit in the hospital while hours inch by. You talk to doctors and nurses. You smile. Its fake. A thin façade one wrong tap away from crumbling. Mamas wear this veil often.

You restrain your hysterical son as they put the IV in. He bites you. He hits you. He yells “NO MOMMY, DON’T DO THIS!” The child psychologist they brought in to “keep him calm and talk him through this” is useless, slumped against the wall. You wonder how much it cost you to pay for her slump. You cling to your brave facade. You watch every second of the procedure, needle piercing that perfect skin you love to kiss so much.

When you walk out of Lurie Children’s Hospital, you are in a state of shock. He passed. He is done. You are done. Your family is done! It doesn’t feel real. Dreamlike trip down the hospital elevator. It was a long stressful day. You tried explaining to a three year old why he had to eat the food you swore makes him sick. He doesn’t understand any of this. You had to train him to be his own advocate. The cost of safety frightened him, maybe forever.

You buy the offenders. Banana. Avocado. Kiwi. Bring them home. House is stocked with forbidden foods. Old forbidden foods. He won’t eat even one bite of banana. Still insisting it makes him sick, that he doesn’t like that, that he hates them.

You offer to make banana cookies. Let’s make this fun! He helps. He smiles. Big brother helps, he is very excited, bananas are his favorite. You bake the cookies. Let them cool. Hand him one cookie. He takes a nibble, yuck! “They are gross mama,” he says.

You sigh, and let it go. Big brother likes the cookies. You like them even more and end up eating most of them. They taste like banana bread. You offer banana with breakfast. “No.” Banana with lunch? “No.” You let it go for a day, a week, “banana?” “No! Bananas make me sick, mama.” You smile. “Not anymore sweetheart, but we can try again later.”

You peel a banana. You don’t scrub your hands and handle his food at the same time. You wipe your hands on a towel, not panicking that he might have a reaction. You feel free. The burden of reactions no longer dragging you into the abyss.

You bring avocado back to Taco Tuesday. The whole family likes this. You never really stressed the avocado allergy, because toddlers and babies don’t have much time to get their hands on one of those. He tries that. “Too spicy” Normal three year old reaction. You feel a wave of relief.

You go to the closet to grab something. Your eyes linger on the epi-pens. “I should toss those.” You don’t You close the door. Turn off the light. Walk away. Maybe later.

You sneak a banana into your smoothie. He loves your smoothies. He drinks that. He doesn’t know. You feel sneaky but victorious.

School tells you they had banana with lunch. He wouldn’t eat it. “I no eat the banana mama.” “It’s ok. Maybe when you’re six!” “Yeah when I’m six!”

You thought the other side of food allergies meant life going back to the first normal. You were wrong. It laid way for another new normal. You slipped on a new worry: that you caused permanent damage.

You look in the mirror, shake your head. You fought for him. You took the punches and bites. You cleaned up the vomit. You rushed him to the ER. You demanded answers from doctors. You made lists. You made documents. You had a medical binder. You HAD to teach him to be safe. It was life or death after all. You are strong. The other side of food allergies is your next journey. He outgrew the offenders. He will outgrow the fear.

I have been so swept up in taking care of Alexander lately. As I should be. We are a few days shy of 6 weeks of his GI issues. He HAS had a few good days mixed in, but then a day or two later it seems to return. Thursday night I took a step back mentally and thought about how consumed I have become. I need to be his advocate because he cannot be his own, but a lot of other things seem to get pushed aside. One of those being posting recipes. I am still cooking and there have even been a few that I meant to get around to sharing but didn’t. Another has been making fun shaped meals for the boys.

Yesterday morning despite all the craziness. Alex waking up hysterical at 6am. It being a school morning. Me trying to film a Pilates video for MarchMATness. (I failed at that! I caught up today though!) I made time to make them a fun breakfast. Jackson was over the moon. Alex yelled at me that there were blueberries on his heart shape french toast sticks. He grumbled then picked them off. You can’t win them all I suppose. Jackson loved his shamrocks!


We had his GI appointment on Wednesday. The only way I can describe it is awful. I have never felt like I wasn’t being heard quite so much at a doctor appointment. I explained what we had been dealing with. Chronic diarrhea with maybe 3 good days mixed in over nearly 6 weeks. She did a brief exam of him. She diagnosed him with CONSTIPATION. She actually said he is constipated and that some loose stool is just slipping around clogged poop. She then prescribed a colon cleanse for a 17 month old toddler! A colon cleanse. Following the 3 intense days of being on a laxative, she wanted him to be on the laxative in a smaller dose for SIX WEEKS. At which point we would “discuss weaning him off of it.” She also told ME that I don’t feed him enough fiber, without even glancing at his food journal I have been keeping meticulously. She said I also give him too much milk. Something I have never been told by a pediatrician regarding either of my boys. I always fill out their food intake at their physicals. I questioned her on this. My mom was there, she questioned her on this. She just kept insisting he was constipated.

I informed my husband. I told him to pick up the prescription. He did some research while I was getting us all home. Miralax is not greatly received and there are many concerns with it. We both then researched child constipation. We did come across some instances of loose stools being associated with it, however they were more of smears or as I like to call them “hershey squirts.” Alexander has full blowouts sometimes up the back diapers. Multiple a day. These are not squirts. They are giant diapers. We decided not to start any laxative that evening.

The boys’ pediatrician is off on Thursdays. During the day I contacted my husband’s aunt, who is a pediatrician and family doctor. She lives out of state. I explained in great detail Alex’s history and asked her opinion on the diagnosis and colon cleanse. She was very concerned with that recommendation and definitely wanted us to speak to Alex’s Pediatrician as soon as we could. I called her and left a message yesterday morning. When she got back to me she read me the report of the GI with a tone of surprise in her voice regarding the constipation diagnosis. I seconded her concerns immediately and explained that was the exact reason I left a message for her. We were NOT happy with that and we don’t feel that he is constipated with the amount of poop he has. She agrees. She has been at our side since this started 6 weeks ago. She has seen some of the diapers. She told me to monitor him over the weekend. Thursday he had a couple better diapers. Much more normal consistency but yesterday there was another loose one. She is on call all weekend if we need her. She wants to touch base next week. Possibly perform another exam herself and then if it is still ongoing send us to another GI at a different hospital.

I have told people this before, but I am so thankful for her. She has truly been wonderful through all of Alexander’s issues. She has been by our side. She has tried to find us answers and if she couldn’t she has tried to find a specialist that can. She listens to what I have to say. She calls me back whenever I leave a message for her with questions, updates, or concerns. She sees the boys when I want them to be seen. I am not sure what life would be like with another pediatrician and I don’t even want to know. I am so incredibly grateful I came across her when Jackson was 2. At that point in time I didn’t know that she would be such an integral part of our family’s life.

We still don’t have all the answers on Alex, but that is ok. We have been working hard to figure it out. We have someone who is his champion and wants to help us solve this. We will get there. It may take some more time. I have come to terms with that. This whole situation could be worse. We could have a pediatrician that acted like the GI we saw, and then we would be nowhere at all. Luckily, we have one of the great, amazing, and incredible apples in the Pediatrics world.


He hates EB


He LOVES chocolate


These two are my world!


He likes flying

Waiting is hard. For your entire life you learn little lessons in patience. They build up and are supposed to help strengthen you. As a child you eagerly await Christmas morning. As a teen you eagerly await the day you can get your driver’s license (unless you were like me and pushed it off as long as possible). As an adult you wait for all kinds of things.

I am finding all of the lessons in waiting that I experienced to be completely useless. We have waited so much with figuring out answers for Alexander. The more I end up having to wait, the less patience I find myself having.

This week we received the rest of his blood work. Alas, the waiting for that is over. Everything else came back negative for IgE allergies. I was definitely overjoyed about that. We are still not giving him bananas or avocado as he has had FPIES reactions to those. As a precaution we are avoiding kiwi, because kiwi is closely related to both of those foods. Eventually in a controlled setting we will test for them, but that time is not now.

This week we have had a bit of a setback with his bowel movements. His diarrhea has returned. I have been monitoring him all week. There have been worse diapers and better diapers. Today has been worse all around. We are up to 4. One was on the floor while he was airing out because the rash has also returned. After the second diaper today, but two of many this whole week, I made the decision to call and schedule an appointment with a Pediatric GI. I need to get some kind of answer in order to help him. Unfortunately, there are no appointments until nearly the end of April. More waiting.

After the 3rd diaper I decided to call his pediatrician and update her on the return of the diarrhea this week. I know she is out on Thursdays, but she is usually in on Fridays, so I intended on leaving a message for her. She will not be back until Tuesday. More waiting.

Waiting is not getting easier. It gets exponentially difficult. I feel overwhelmed with helplessness because I just want to give him a life that is as healthy as possible. I want him to be as healthy as possible. I don’t want him to get rash after rash from loose diaper after loose diaper. I feel a tightening in my chest at any given moment in a bad digestive day. I sigh a lot. I just stare at him and feel my heart breaking for his tiny little body. He has grown to detest diaper changes. I ache for him when he freaks out over that. I have started to let him watch videos on my phone in order to calm him for every single diaper change, even regular pee ones. He just freaks out. Today, that has not helped. His aversion to it is so strong, knowing he has these BMs, that he loses his mind.

I have Jackson, my helper during the days. He is quick to act if I need help with something. Today it was cream while I wrestled a screaming Alex down after he pooped on the floor. A 5 year old shouldn’t have to be my saving grace during a moment like this. My poor sweet oldest child. The other day at his school his teacher asked if he wanted breakfast when arrived. He had eaten at home but said yes. She mentioned there were bananas. Then he said “just don’t give the bananas to my brother. They make him puke.” It is so wonderful that he is so caring but it also breaks my heart that we are even in a situation that we had to drill that into him. He is amazing. His heart is huge. I am definitely way too cranky and short with him way too often. I keep my conversation open, explaining why I am sometimes so stressed out, especially on bad digestive days. I tell him how hard it can be and how I am feeling. I listen to what he has to say about he feels about it. We hug.

Sometimes after naps, Alex wakes up hysterical. Inconsolable for at least 30 minutes, sometimes longer. Nothing can settle him down. There were at least 2 days this week like that. Today and yesterday were better. Those hysterical afternoons are hard. I hate not being able to soothe whatever is clearly causing him distress. More waiting. Waiting for him to ride it out and I try to hold him and comfort him and offer him whatever he needs.

I hate waiting. For once, it is not from our instant gratification society. For me, it is because after 17 months of bumps in the road, I want answers for my baby. I am tired of waiting. I want to help him. I want to have the proper tools to help him. I don’t want to just keep him comfortable and his butt slathered in cream. But it seems for now, waiting is in my foreseeable future. I will be waiting until Tuesday. I will be waiting until April 21st. I will be waiting for his next diaper, anxious to see if it is diarrhea or not. I will be waiting to see if he wakes up happy or hysterical from his naps. Waiting for my answers.

I love someone rare

It is Leap Day. It is also Rare Disease Day. My sweet little boy is the reason I am talking about this day. This sweet little boy has kept me on my toes since I was pregnant with him. He is always up to something and giving me some kind of scare. From being admitted at 35 weeks pregnant due to low amniotic fluid and possible very early induction to save him, to an umbilical cord that took a wrong turn and took months to close up and heal, to FPIES, to an ER visit yesterday morning because he got his sweet chubby thigh stuck in the crib all night and it was covered in welts, swollen, stiff, and he limped. I rarely have a dull  moment with him.

He is so full of life. He is very brave. I do not see him hesitate in life very often. If he sees something he wants to do, he will 99% of the time go for it. He loves to make me laugh. He loves to feed people or share his food with them. His smile is contagious. I dare you to see him smile and try to keep a smile off of your face. He is a fierce momma’s boy. I say this a lot, but it is true. I am always holding or snuggling him. Did you know, I literally get a standing ovation every time I walk into a room and he sees me. He stands up and claps, cheesy grin plastered across his sweet face. He loves his big brother so much. The way he watches Jackson makes my heart melt. Jackson had his 5 year vaccinations last week and completely freaked out. Alex had been fine mischievously walking around the exam room up until that point. As fat tears fell on my arms while I held Jackson, Alexander walked up, watching. I slowly watched his face transform from curiosity, to concern, to outright devastation, as he too began to sob. I love to hear him say Dada. If I just mention the word Daddy he lights up and says Dada, DA! DADA! That is his biggest buddy. He tries so hard to keep up with the two big guys around here, when they play catch or when they wrestle. Which is frequently to both things.

Then there are the moments where he does scare me because things seem to happen to him at a higher rate than did Jackson. Maybe it is because I am so hyper aware of all things involving him that I notice every small tiny deviation from normal patterns. Or maybe, things just do happen more frequently. It is likely a combination of both. We have had even more situations than I mentioned earlier. I really glossed over things there. I glossed over how scary it was when he was first having FPIES reactions and we had no clue what was happening. I will never forget when his tiny body went into shock and what he looked like. I will never forget the fact that when he was born, he didn’t cry. The cord was wrapped around his neck and the nurse took what seemed like an hour to get him breathing. It wasn’t an hour, it was probably a few seconds, but in that moment, having given birth previously, it seemed like an eternity.

His may not be the most dramatic rare disease. His may not even be the most dramatic case of FPIES. I am so incredibly thankful for that. Every day I am thankful that when it comes down to it, so far, he has just scared us with things that we are capable of managing in a healthy way. It doesn’t take away from the fact that these things seem to happen to him or that he does in fact have FPIES and is IgE allergic to bananas. Most tests came back negative, that one did not. We are still waiting on a few more results, including avocado and kiwi. I can manage these things. I can keep him safe. I am thankful that every day I get to see that toothy silly grin and those big blue eyes and that raspy voice say mom mom mama mom mama mama. There may be moments where I am utterly exhausted or feeling overwhelmed with doctor and hospital visits or just from worry or from regular mom stress, but all it usually takes is a hug and snuggle into my neck to bring me back down. And if I am lucky, big brother Jackson is telling me I am the most important thing in the world, even more important than monster trucks, and you know how much I like those mommy!

Happy Rare Disease Day 2016!



Elizabeth Stone has said “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” I have known this for the last 5 years, since Jackson was born. It seems to be resonating even more this week. We are on day 11 of diarrhea with Alexander. The pediatrician wanted to see him yesterday when I spoke to her about it. It had been far too many days for her to be comfortable with just riding it out.

In the office he happened to poop, which was actually helpful. Unfortunately, they found black blood in the diaper. Have you ever had moments in your life where time kind of stands still? I would describe it as how they portray it in a movie. A monumental moment in the storyline, where the character seems to move yet the world around them is in slow motion or totally frozen. I have now had two of those moments in my life. This was the second one. I did not expect her to come back and say that. She was gone less than 5 minutes. Alex was trying to tear apart my diaper bag and I was texting my husband back. She sat down to explain this to me. She went through the list of possibilities and what we are doing moving forward. I heard every word, but the world around me seemed to slow down. The smile I had on my face when she walked in quickly vanished. I was oddly aware of the motion of my face changing.

Today, the diarrhea is actually worse than it was yesterday. It has kind of gone back and forth over the past 11 days. He is unhappy at times. Large chunky tears rolling down his squishy plush cheeks. I wipe them away and kiss his sweet little face. I hug him and he snuggles his face into the right side of my neck and shoulder.

He is his normal mischievous self at times. Trying to grab his brother’s robot toy. Tearing apart the cabinet in my master bathroom. Rearranging all of my makeup, serums, and creams. Smiling his big toothy smile as he walks up with his arms out and says “mama mama” He is always a momma’s boy.

This morning I dropped off the additional vials for them to run labs. Now we wait. Now we focus on keeping him hydrated, avoiding an ER visit if we can. Now we hug and kiss him. Now we watch him play as our hearts are in our throats. Now I sleep restlessly and wake often. Now I scrub things around the house because sometimes that is what I do when I am particularly anxious. Now I try to remember that Jackson is having a hard time adjusting to the new way of life around here. Now I try to explain to him that he is important and special too. Now I try to give him extra attention. Now I wonder, where does all of the time go during the day? There is a lot to think of at every moment.

My heart walks outside of my body. Split in half. Each boy carrying a piece with them. The pieces made of porcelain. Alexander’s piece seems to be particularly fragile at the moment. Or maybe it is the carrier of that piece that is fragile. Regardless, my heart has not been my own in a long time. Half a decade. My heart belongs to them and all I can do is sit back and hope with all hope that it doesn’t get even one little chip on it. Knowing full well, the world doesn’t actually work that way. It will get battered and bruised as I sit here with open arms waiting to welcome the halves back whenever they need me.

Last Thursday we received a final diagnosis for some issues our little guy has been having his entire life. Long story short he has Food-Protein Induced Enterocolitis Syndrome or F-PIES. In simple terms it is a food allergy affecting the GI tract. You can check out that link for a ton more information. He also has a blood test coming up next week to check for a ton of other food allergies. We will have some more information on those in the next coming weeks.

I have known something was off with him since he was born. He has always been a puker. He had a hard time gaining weight. Once we started introducing solid foods and eventually dairy milk (he seems to be lactose intolerant on top of F-PIES), his vomiting and diarrhea continued. The offending foods so far have been bananas and avocados. If he eats them, it never fails, a couple hours later is his vomiting profusely. One time he got so dehydrated and in distress that I rushed him to the ER.

From what I have been reading over the last 5 days, my breastmilk likely was not helping him. I say this because I live to eat bananas. Or at least I did. They are dead to me now. But I would freeze plates of them and eat them like chips. I would eat them in my smoothies Every day that baby was being exposed to something that made him ill. I had no idea.

I did bring this up on multiple occasions. I showed up to doctor’s appointments with a list of symptoms and incidents. Before he was on solids, because he was still happy and not seemingly in pain after throwing up it was dismissed as reflux. However, not a serious reflux so he never needed medication. He would just outgrow it. I was referred to some allergists by our pediatrician after the multiple fruit incidents. We researched them and picked one. When I called, they refused to see him because he was under 1. Since we wanted to see her and everyone else said they really didn’t think it was an allergy because he was only throwing up etc, we waited. I feel awful.

When we did finally see her, we hated her. The whole experience was miserable. I won’t go into individual details, but it was a bad time for all four of us. Then she had no idea about FPIES but thought it could sound like that. She left the room and literally Googled it. She printed what she found and gave it to us. Promising to call us back that week. She didn’t call back until a week later. We went home and found the exact information she gave us on our very first Google search. We were not happy. I called my pediatrician and explained the potential diagnosis. It then clicked with her that she has a couple patients with that and has another allergist who works with them.

I saw him last week. He was amazing. He is very versed in F-PIES. He went through the whole process with me. We scheduled the blood tests. He prescribed EPI Pens, that I now have to carry at all times. He needs them in case he gets to the point of dehydration he got to before the one ER visit. It won’t stop the allergic reaction, but it will bring his blood pressure back up and prevent a more serious situation that comes from that kind of distress on the body. We were given a letter to give to the paramedics and ER so they understand what this rare syndrome is. As we have learned, many doctors are not familiar with it at all.

The last five days have been incredibly reflective for me. I will literally never forgive myself for not figuring this out earlier. I will never forgive myself for eating the very food that makes him so ill and then continue to breastfeed. I will never forgive myself for his struggle to grow during his first year. I feel just terrible. I feel terrible that I didn’t demand more answers. I feel awful that I just accepted the fact that this one allergist didn’t see babies under 1. Why didn’t I pursue another allergist who WOULD see him? Why did I want to see her so badly based on silly online reviews? Why did I just accept his throwing up as reflux? Why didn’t I Google more and more and more? I get a lot of comments for how much I Google symptoms. I always hear that I shouldn’t freak out because of what I had found on Google. What if I had searched a few more terms and come across F-PIES when he was 6 months old? What if? What if? What if? Mom guilt, it is for real. I have never quite experienced it like I have in the last 5 days. I have felt guilty over other things, especially with balancing two kids. They are both playing around me as I type this. Jackson trying to show me some monster truck tricks and Alexander is raiding the pantry. I have fed, played with, read to, and bathed them already today. It is not even 10, so a few minutes to get this off my chest is not a big deal, yet I still feel kind of guilty. But nothing about how I feel over the first entire year of my sweet baby boy’s life. Maybe the next 5 days will be easier….