EVENT DATE: Sep 09, 2017
Alicia Kalustian Schweizer wrote -
What is FPIES? ( FOOD PROTEIN ENTEROCOLITIS SYNDROME)
FPIES is a rare non IgE form of food allergy that primarily effects the gasterointestinal system. It typically begins in infancy. Symptoms occur roughly two hours after ingestion and include severe, repetitive vomiting, diarrhea, lethargy , dehydration, low blood pressure and body temperature, and in extreme cases can lead to shock. Currently, there is no standard testing to properly diagnose FPIES or to determine what foods/triggers will cause a reaction, or how severe a reaction will be. The only way to determine a trigger food is by ingestion ( via food trial ) . Most children are affected by a few triggers, but some strugge to find a single safe food and end up on medical formula as their sole source of nutition, and in some cases these children end up with a feeding tube as well. Presently, there is no treatment or definitive answer if a child will grow out of FPIES. Eventually , patients may need extensive feeding therapy or psychological therapy as well. As of now, there is no way to stop or prevent a severe reaction ( an Epi Pen is not even effective with an FPIES reaction) . Strict avoidance is the only cure as of now. Leaving some children with very litte to no food that they are able to eat.
What & where will funds go to?
We are raising money to fund cutting edge research through IFPIES ( International FPIES Association) - a non profit organization who works with a team of physicians who are dedicated to finding answers . IFPIES mission is to aggressively fund cutting edge research . Some of their main goals with research are
* Creating ways to test for FPIES
* Easier and more effective treatment plans
* Genetic testing ( which is officially in open research!!)
* MOST of all, find a reason and a cure!!
In the past few years, IFPIES has come unbelievably far and this brings our FPIES community so much promise ad hope for the future!!
IFPIES also just published a 97 page guidelines criteria book that is currently going out to every pediatric GI & Allergist in the entire nation!! This is ground breaking news, as most Drs are not familiar with FPIES. They have also recently founded the ICD-10 code, which means there is FINALLY a diagnosis code available ...... By using the ICD-10 code, patients are now able to have insurance coverage with medical expenses such as medical formula and med supplies, hospital visits, dr visits, and even intensive feeding therapy programs! Most importantly, they have an actual diagnosis on record !!
Our motivation and story.......
We have created this page because we have a passion to help make a difference! Here's our story...... Thank you for reading and sharing as we try to raise awareness as well :)
This is not our first rodeo with FPIES, it is now our second, and the battle is even bigger than we had ever imagined ....
Seven years ago, our middle son Jake was diagnosed with FPIES.... Food Protein Induced Enterocolitis Syndrome. At the time, it took about 10 Drs until we finally found a diagnosis , and even then, our dr still knew very little as it was so rare and there was very little research done at the time.... As he grew into a toddler, he continued to projectile vomit after every meal. He had countless tests done, and all we knew at the end of the day is that he has FPIES..... thankfully he outgrew most of his issues (but still battles FPIES to this day) We never really knew what it was beyond the diagnosis name. No information was found on the internet , and our Drs only knew it causes severe to life threatening reactions when eating.... there was nothing more than that.... we were also told not to worry if we have another child, because whatever was happening to Jake was most likely a "fluke"
Fast forward almost 5 years, and after much thought, we decided to expand our family ..... Our baby boy Nico was diagnosed with FPIES at just shy of 4 weeks old. Nico is now 2 years old and his sole source of nutrition and only 4 semi safe foods consist of medical formula, apples, mangos, white potato, and corn . His body rejects all foods as if it's a foreign invader. Reactions can be as severe as a vomit to shock reaction, and dangerously low blood pressure . There are many other miserable side effects as well.
Since there is currently NO standard testing that can be done to diagnose FPIES, or to know how severe reactions will be...... these resilient babies/kids have to learn the only way, the hard way, to eat .....wait....and see what happens . Reactions usually kick in within 2 hours after ingestion and can last up to 2 whole weeks. In severe cases, the ONLY way to stop the vomiting and bring their blood pressure back up is through an IV. Nico's body also rejects basic remedies such as pedialyte and most medications you find over the counter...making it very scary when he spikes a fever and has a cold. We don't have many options.
The FINAL straw that had us saying " That's it! We NEED to find a way to help make a difference , there has to be an answer, so what can we do?!" Is when Nico spent his 1st birthday in the hospital (sick for weeks) from a few tiny bites of chicken, ( the chicken we prayed so hard to be his first safe food for his first birthday) he was there for a week, violently sick and lost 3 lbs within 3 days , severely dehydrated , poked so many times they literally ran out of places to poke, his entire body covered in bruises. The hospital is where we celebrated his 1st birthday, where we decorated his crib and made the most of it. It's definitely the last place you want to celebrate your child's 1st birthday, and it's not fair , but we were just so thankful and grateful to still have him with us. He then went on strike and refused his bottles, it took several months for him to gain those 3 lbs and his appetite back, as he had to overcome the fear of food , it eventually effects social life, family life, home life, school, and robs these sweet children of their happy carefree childhood that they truly deserve . Nico recently ended up with a feeding tube to administer medication and formua for nutrition , and has also been admitted to an intensive therapy program in Grand Rapids.... where we lived there for several weeks/months , and although we are home now, we still may have to return for more .... We spent his 1st birthday in the hospital , and now we will spend his 2nd admitted with intensive therapy and hosptial admissions due to complications from FPIES.....
Here we are and Nico is 2 now and Jake is 7 yrs old . These kiddos have so much they could be mad about, yet somehow they are the most resilient and happy children.... they fight hard, and they deserve to live a happy childhood without facing such battles.
IFPIES needs our help, TOGETHER we can make a difference!!
Thank you in advance for your generosity, it is so very appreciated and truly means a lot!
~The Schweizer family
* If you would like to learn more, please visit www.FPIES.org or visit International FPIES Association on FB *