Friday, June 7, 2013

How I Meet the Boogie Man: Cohen's Journey With FPIES

As parents we have all done the routine check.... under the bed, in the closet, behind the toy bin... No Boogie Man, we say.  

I have always been able to reassure my little ones that there is no monster lurking in the night.... But that was BEFORE I met the Boogie Man! 

He isn't at all what I would have expected, he isn't 10 feet tall with gnarling teeth and green eyes. In fact he is quite the opposite, invisible and silent and he doesn't fight fair! He doesn't hide in closets or dark spaces, or even in the dead of night.  

We have now entered into a world that two months ago I knew nothing about... and now it consumes my thoughts. Our Boogie Man has a name, it's FPIES~ Food Protein Induced Enterocolitis Syndrome

How do you protect your sweet child from something you can't see? How do you pick up a spoon and put it in your child's mouth, not knowing if it will put him in the hospital? How do you live in fear of crumbs? How do you go anywhere scared that someone will offer your child something without asking you?

Not knowing the answers to these question is not only frustrating but frightening.  

This is Cohen's story...

Our sweet boy has had such a hard beginning. His first 8 months of life have been filled with medications, needles, IV's, x-rays, hospital stays, and doctor appointments. He has an arm list of diagnoses and has had more medications then I care to mention, but he still smiles and laughs at all of those blue gloves that come his way. Our medical team of caregivers consists of a pediatrician, pediatric pulmonologist, and a pediatric gastroenterologist. It is a bit overwhelming to say the least but we are trying to get a grip on our new normal (which for some reason keeps getting redefined for us!)

Cohen spent the winter fighting RSV, Pneumonia and Asthma.  He was in the hospital on oxygen for about 10 days, it is only now that we had finally started to feel like we were winning the battle... And then we meet the Boogie Man!

It was time to start introducing solids, so we did like all parents do, we started with the basics. We decided to begin with oats. We offered several diluted servings and just like most little ones he wasn't so much eating as just learning to eat.  

And then it happened....

I thought I would try to give him some oats before bed to see if he would sleep better. About two hours later he began to vomit, it was one of the most violent vomits that I had ever seen. It only lasted a couple hours and then he seemed to just go limp and fall asleep. I thought he must have caught a nasty virus and prayed that no one else in the house would get it.  That night he seemed to sleep so deeply that it scared me. So I laid beside him all night watching him breath. The next morning he was fine, no sign of illness and we went on with our life. In the back of my mind I began to question the oats, but I would chase the thought away with another, "No one has allergies to oats."  

I decided to avoid food for about a week to let him fully recover. When it was time to eat again I whipped up some oats.  My little one was all smiles that day and obviously feeling well. He finished eating his oats, nursed and then went down for his morning nap. About two hours later my daughter comes in and tells me that Cohen is crying and all wet. I found my sweet boy all covered in vomit and his bed flooded. I picked him up and he continued to empty the entire contents of his stomach until he went limp in my arms (a very familiar sight after the last episode). He continued to gag and choke up green bile, I called his pediatrician because I knew that babies weren't supposed to vomit bile.  I was instructed to immediately take him to the emergency room,  I knew that the biggest concern for them was an obstructed bowel.   

After blood work and x-rays they decided it was necessary to start an IV and give him Zofran. His x-ray revealed an ileus but according to the physician that wouldn't have been unusual for an infant with a virus. I couldn't shake the oats, so I asked if they thought it could have been the culprit but I was told that Cohen didn't present with a rash and it didn't act like a typical allergy. They really felt it was just the nasty bug that they had seen in so many other children that week. 

I wasn't convinced, for one when you have five little ones and only one of them gets a vomit bug (twice in two weeks), well lets just say that doesn't happen!!!  Once again he was perfectly fine the next morning.

At this point my mama instincts had kicked in and I had decided we weren't going to be eating oats anytime soon. So after about two weeks of avoiding everything we moved on to sweet potatoes, but he refused to eat. We tried peas, but he refused to eat. We tried apples and strawberries, but he refused to eat.

Discouraged and frustrated we decided to try the organic apple puffs that we had on hand, thinking maybe he didn't care for the liquid texture. I managed to manipulate a few through his gums and he seemed to not mind them, he actually ate a few.  Two hours later he was playing in his little car and I heard a strange and familiar cough.  Moments later it happened... the same violent vomiting that I had seen twice before. Once again I held him as he and completely emptied his stomach and then began to gag up bile and go limp in my arms. I immediately scanned the ingredient list and confirmed my suspicion, there it was in black ink... OATS!  

This time I turned to the Google search engine, "Why does my child vomit after eating oats?" I found myself on baby center with a list of helpful mothers suggesting Celiac disease but one mother mentioned something I had never heard of....FPIES. I did a quick search on it and found some information but I didn't have time to read through it all, my husband felt that I needed to get Cohen to the ER. On the way there I called a dear friend who is a PA and told her about what was happening, she agreed that we needed to have him seen right away. This time when we got there I told them that I KNEW this was caused by the oats (three times is enough to confirm that) but what I didn't know was WHY?

My friend called me back while we were there, Cohen was already on IV's at this point.  She told me, "I found something you need to ask the doctors about, it sounds exactly like what is happening to Cohen, it's called FPIES!"  I had just read something about that... we both agreed that I needed to share this with our doctors.  No one in the ER had heard of it, after researching it on their own they confirmed that they too felt that this is what our son was experiencing.   When I read what other families went through with acute episodes it was eerie just how well it fit, it was as if someone had been watching us and documenting everything.

We went into see our pediatrician the next day. Knowing just how rare this condition was I brought her journal articles and other information. She had never heard of it either but felt like this was a very strong possibility and she made us an appointment with a Pediatric GI.  We were fortunate (thank God for good friends) we were diagnosed quickly compared to so many others.  Because this is such a rare conditions sometimes families struggle for months and months before finding a physician that properly diagnosis their little ones.

Unfortunately, there isn't a test for FPIES and it doesn't appear on scratch or blood tests because it is not an IgE allergy like peanuts or eggs. It is only after ruling out other possibilities that a child receives a definitive diagnosis. This allergic reaction takes place in my sons small intestines, which is why it takes so long to react after eating the offending food. For that reason there isn't a good way to learn what he is allergic to so we must conduct food challenges. It is frighting to think that everything that goes into my child's mouth may put his life at risk.  Children have to eat, so we have no choice but to experiment with foods, praying that we don't need to hospitalize him two hours later.

This is only the beginning of our journey, as of right now Cohen doesn't have any known safe foods. We are starting food challenges but it takes at least ten days of exposure and no reaction before we can deem a food safe.   I am hopeful that we will find food that will nourish my little bullfrog and that we will learn how to navigate through our "New Normal". Until then we will continue to hold off the Boogie Man as best we can knowing that every battle with him will bring us knowledge and little closer to winning the war. 

Philippians 4:13

I can do all things through Christ[a] who strengthens me.

For more information on FPIES please visit The FPIES Foundation or IAFFPE

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  1. Stay strong Cohen! You are a strong little man.

  2. Laura Hensley ThomasJune 7, 2013 at 5:54 PM

    I am so sorry to hear that you are going through this. He has an amazing mothers- who researched, asked questions, presented the facts clearly and observed her little one closely. I am hoping too that you find lots of great foods that will nourish his body. My best friend's son has severe food allergies- he always has been very leary of food (like your little guy- who refused some foods because of a couple of bad experiences) It ends up being a blessing! You want them to kind of be afraid of new foods especially- when food is the enemy, it's a scary thing. Best of luck, we will remember you in our prayers.

  3. Thank you both so much truly appreciate the encouragement!! It is so hard when you have four others that eat.... and drop crumbs!! Our newly mobile little one is everywhere and we live in constant fear of him accidentally getting something that will cause a reaction. The future seems so difficult from where we stand right now but I am confident that God will provide for us!! Thank you for your prayers. Please continue to share this, the more information that gets out the better chances we have of getting help with research and hopefully a better way to treat and diagnosis FPIES.

  4. I have tears...and I've been on this road for a few years. You wrote his story beautifully, the details take me back and put me there -- which also means it will help another momma one day in your same shoes googling "my baby violently vomited oats". Hugs to you and your sweet boy.

  5. Joy~ Thank you so much for your sweet words, this has definitely been a learning experience for our family. God is always teaching us something! I have so much to learn about this illness and how to help my little bullfrog but it is so comforting to be able to rely on the experiences of those who have walked this path. Thank you so much for your encouragement.

  6. Reading this is heartbreaking... Its like reliving what we went through. My LO is 2 1/5 (only tolerates bananas and Neocate) and we are just now starting a food trial. Allergist wants to trial whole milk. It's so scary. Lets pray our babies will out grow sooner rather than later. Seems like the parents in these situations know best. Keep doing what you are doing. XOXOXOXOXOXO

  7. Someone on a group just posted your page for me as my child has fpies she is 17 months old she was not diagnosed tell she was 15months old :(

    1. I am so sorry Brandy I can't imagine having to live that long without having an answer. We were fortunate enough to get a diagnosis very quickly. This is such a tricky disease it is definitely a challenge to say the least. I hope your little one is doing well and that your able to get the support that you need. Prayers for you all!!!

  8. Carrie, is this something they grow out of?


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