Wednesday, June 26, 2013

When has your child been on too much medication....

Today while we were working on our Grammar lesson my daughter reminded me that our road of illness has been a long one.

We spend a lot of time trying to keep Asthma at bay in our house.  Unfortunately, that means we frequent our doctors office and have had to administer more medicines than I care to mention.  So it feels good when we get a chance to find humor in our circumstance.

It is always interesting to hear my children's responses to my "school" questions, but their answers today left me in stitches...and painfully aware that my children have had far more than their share of illnesses.

We were reviewing singular and plural articles and when I asked my oldest two to recall what "singular" was.... my oldest butterfly replied, "Hum.... medicine?"

We spent the next few minutes laughing to the point of tears.  If you are familiar with allergies you know that what she was referring to was, Singulair [sin-gu-lair].  This is a medication that she was on at one time but had to go off of it because of side effects.

I can't decide which I should be more concerned about, the fact that my sweet butterfly can't recall what a singular article is or that she has been on so many different medication that she could make this mistake?????

None the less it sure feels good to laugh!!!

Psalms 47:1 Clap your hands, all peoples! Shout to God with loud songs of joy!

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Saturday, June 15, 2013

Living in a FPIES Fog

When you live in the world of FPIES you live in a fog of uncertainty, it makes no difference whether it is your first child or you’re fifth.  This illness changes all the rules leaving parents only to guess, and second guess every aspect of caring for their children.  Seemingly natural decisions become painstaking for the parent of a child with FPIES.  Because trigger foods can be different for every child it is almost impossible to predict reactions.  Some children react from a single exposure and some after many... some have only one trigger while others have no safe foods at all… some have chronic reactions, some have acute while others have both..... 

We have to sort through the everyday things to figure out what is a reaction and what is a baby simply being a baby.  Sometimes babies cry just because they are tired, sometimes baby spit up for no reason, sometimes babies have odd diapers or get viruses.  But IF those babies have FPIES then all of those symptoms could mean the beginning of painful reactions to the foods they have ingested.  So it is up to us parents to sort through it all and care for these special little ones... desperately trying to minimize as much pain as possible.   We walk a fine line, teetering between over reacting and under reacting to our little ones needs.

When and what we feed our children become crucial decisions that could have costly consequences.  It is as if we are walking through a mine field while wearing a blind fold.  We learn to trust our instincts because that's all we have to give as protection for our little ones.  And sometimes that isn't enough!

So before you judge us please understand something..... it may seem like we are over reacting to a little spit up, frantic over a seemingly harmless crumb on the floor, obsessed with our infants bowel movements or overly concerned about a crying infant.  But what you don't know is that we have spent sleepless nights caring for a child that is hurting so badly that they can't rest, we have watched a crumb turn our little ones insides out, and held a limp and listless little body in our arms...

We desperately try to blindly navigate through the Fog of FPIES the best way we know how, but there are no rules, no guidelines for us to turn to or steer us through this journey.  We count mostly on the encouragement and experiences of others that have walked this path and we seek comfort in our small numbers. 

So many have worked extremely hard this year to help create managed care for FPIES.  Public awareness is crucial!  Recognition will enable us to bring light to this illness, opening up opportunities to develop research so we can begin to lift the fog and give our little ones a brighter tomorrow.

For more information about FPIES go to        or   

Isaiah 26:4 Trust in the LORD forever, for the LORD GOD is an everlasting rock.

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Wednesday, June 12, 2013

The Heart of a Bullfrog

My biggest bullfrog has such a sweet heart and I am so proud of the way that he freely shares it with others.  I have learned so much from his tender ways and I couldn't be prouder of him.

The other day while he was out playing with his friends the boys began to discuss their future careers.
  "I want to be in the Air Force", he said proudly.  "Really aren't you afraid of dying?" they asked him. "No because God is in control!"  One of the boys expressed his confusion, "You mean God controls stuff like that?",  "Well don't you think that if God can handle creating the universe and all that is in it then he can handle my life just fine?" said my little bullfrog.  "Wow, I didn't realize that...pretty cool!",  his friend responded.

We should all be so bold and excited to share with our friends that our God is amazing and quite capable of pretty incredible things.  My biggest bullfrog is a wonderful example to me of how we should't keep God's love to ourselves.  As adults we tend to live in a jaded world, forgetting that we have a job to do...we MUST let other's know that they were created for so much more than what they are experiencing.  This world is not the end, it is only the means to an end... A place to prepare us for our real home.

Loneliness, frustration, anger, and hurt...don't exist where we are going.  They live only on this side of heaven and will remain here long after we are gone.  We can't let ourselves be destroyed by them and we have a responsibility to others to help them break free as well.

So in the words of my wise little bullfrog, "Don't you think if God can handle creating the universe and all that is in it then he can handle (your) life just fine?"

 “It is about the greatness of God, not the significance of man. God made man small and the universe big to say something about himself.”

— John Pipe

Matthew 19:26 But Jesus looked at them and said,  “With man this is impossible, but with God all things are possible.”

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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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