EVENT DATE: Sep 09, 2017
Alicia Kalustian Schweizer wrote -
We have created this page because we want to help make a difference! Here's our story, please read and share 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 ....
Six 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 he has FPIES..... thankfully he outgrew most of his issues (but still battles FPIES to this day) and 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 4 weeks old. Nico is now 22 months 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.
There is currently NO standard testing that can be done to diagnose FPIES, or to know how severe reactions will be. Unfortunatley 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 trial medication and foods , and he will be admitted to an intensive therapy program in Grand Rapids.... we will live there for a few weeks, but it could take several more.... and to sum it up, we spent his 1st birthday in the hospital , and now we will spend his 2nd admitted with intensive therapy.....
Here we are and Nico is almost 2 now and Jake is 6.5 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.
We are raising money to fund cutting edge research through IFPIES, a non profit organization. IFPIES just published a guidelines consensus book that will go to every GI & Allergist in the entire nation!! This is ground breaking news, as most Drs are not familiar with FPIES.
Some of the main goals with research are creating a way to test for FPIES , finding a cure , easier and more effective treatment plans, and genetic testing (which they are ready for, blood has been stored in freezers , just waiting on the funds to push through with testing ) . They are hoping to get answers and have a huge break through within the next few years.... It's so far, yet so close! We were lucky to have the opportunity to meet with the medical board of IFPIES, who donates their time to research through IFPIES and the funding that is raised. We learned exactly what the foundation needs as far as funding and their ideas on research . This only motivated us MORE!! Please help us fight and advocate, not only for our boys, but for all of the families who are living with FPIES.
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