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Sebastian's Story 

Meet Sebastian.   He turned 8 a couple of months ago, where for 2 years in a row now, he spent his birthday week at Cincinnati Chilrens Hospital with FA and EE specialists.( keep reading to know what all that means.)He is our youngest of 6. Shortly after his 1st birthday (only a few months before the photo at the side was taken at one of the Baby Expos), we had our first experience with food allergies and anaphylaxis.  A simple scrambled eggs breakfast almost took his life.  In the short time it took us to get him to ER, he was in full blown anaphylaxis (I have never seen so many Soldiers run to help at one time), requiring multiple rounds of Benedryl and liquid steroids, 2 Epi-pen injections, 3 breathing treatments, and an all-nighter, late into the next day ER stay.  That was our first hint at life with food allergies.

 

From there, he had many additional smaller reactions with various other "offenders".  Shortly after turning 4, we began searching for answers as to why his Asthma was totally out of control, resulting in constant steroids, breathing treatments and all the side effects that go along with a severely underweight 5 year being on constant adult strength medications.

 

 Our asthma/allergist had replaced our pediatrician.  The ER had become our second home and Sebastian's over-all health was pretty hindering for a little boy wanting to act crazy all the time with his brothers.  We bounced from specialist to specialist for a few months, doing test after test, having all kinds of blood work drawn and finally ending in 2 minor surgeries. 

 

 

 

The result?  A diagnosis of Eosinophilic esophagitis (EOE), which is the erosion of the esophagus, extreme asthma and multiple life threatening food allergies.  The daily foods we were given him were poisoning his body and causing all his extreme health issues.  Not only is he allergic to eggs and nuts, but also wheat, dairy, corn, rice, soy and tomatoes.  Also, any foods that have the allergens in them.  IN ANY FORM!  That’s almost everything a 5 year old eats.  All these items were pulled from his diet and he was put on Neo-Cate to help with nutrition and weight gain. 

 

Due to his food issues, he is severly underweight.  He cannot have what other kids have.  He has never had a "normal" birthday cake or basic cereal, no more spaghetti or pizza, nor can he even be a room where nuts are present.  The daily struggle is real and now he is old enough to realize he is missing out.

 

 

 

 

Life threatening food allergies can and does kill people, most of which are children/teenagers.The seriousness is often overlooked or debated simply because there is no outward appearance of medical issues.  Our goal is to educate our community on the seriousness of the food allergies and how easy it is to help our children live, learn, and play in a safe and inclusive environment. 

 

After 6 mos after his EE diagnosis, Sebastian began developing extreme unprovoked stomach pain. We began getting calls from school saying he was bent over in pain crying with his stomach. He would scream and cry and beg for help for it to stop. We spent repeated days coming home early from school, landing at our local Gi, his primary care dr and finally at ER . After multiple repetative visits to the ER  and after every possible tests were ran and nothing could be found and nothing helped the pain , we were introduced to a God sent Dr that suggested we attempt to get accepted to Cincinnati Childrens. 

 

Fast forward to this past September when we were finally able to spend the week at Cincinnati Childrens Hospital working 

with a team of specialists in the field of FA / EE and childhood GI related chronic diagnosis. We met with every possible dr from their  asthma and allergy team, to their GI team for FA and EE , to their physcologist, nutritionist and dietician. Sebastain was a trooper under going test after test, sugery , probing , crazy and scary questions and exhausting days of trying to figure out what is going on.  

 

Our scope revealed that the EE damage had progressed pass the second layer of his esophagus. Still have no idea what is causing his random and cluster stomach pain but it has slowed since our meds have been increased. We were given 3 months to stop the progression or our only choice would be a feeding tube to by- pass his esophagus until we find the food offenders. That puts us to now .

 

 We returned from our second trip to CCH the first week in January 2018. We awaited our biopsy result to figure our next steps. We were praying we have escaped a feeding tube and the stomach pain could  be figured out . We are hopeful and prayerful for a new treatment plan that would allow us to  start reintroducing food.  The struggle is very real. 

 

Update: A little more than 1 year into our CCH experience and 4 scopes later , we finally had a clean scope . September began our 1st food trial and we are awaiting the results from that scope. The stomach pain is still present and very random . Because the clusters of stomach pain episodes have returned and the intensity has increased, more medicines have been added. We return to CCH  Christmas week 2018 for another scope and  updates .

 

 

 

As Sebastian's advocate, we use every platform we have been blessed with to raise awareness about life threathening and life changing food allergies. Each year, the proceeds from our shows benefit FARE. FARE  is national non-profit whose purpose is to raise awareness to the seriousness of food allergies, the legitimacy of food allergies and the concept of inclusion over seclusion.  

 

Please help us in helping Sebastian and the thousands of other little ones like him .  Help us find a cure. 

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