Read Jack’s story at www.justjackingaround.blogspot.com
Jack suffers from F.P.I.E.S.(food protien induced enterocolitis syndrome) and Celiac Disease.
He can not eat dairy, gluten, soy, egg, or beef.
This video is long, but we are sharing it for educational purposes.
Duration : 0:10:0
Comments
Great but sad video …
Great but sad video. Hits home for someone like me whose son also has FPIES. He almost died at 10 weeks. Doctors didn’t even want to think that simple formula could have caused my son to go into shock and become almost lifeless. This video made me very upset, for me it’s a look into the future. My son has some testing at the allergist in one week! He is almost 1. We are still hoping it’s only SPIES. He’s doing good, on alimentum now, after not gaining on just bm. Good luck.
I feel very sorry …
I feel very sorry for your son. As a child I was also allergic to milk as I got older it went away. just reasently it came back with a vengence. I am also allergic to beef. It took one month to diagnose it and I had to do it myself cause the doctors didnt even know. It starts with a sore tummy throw up tiredness and most of the time loose bowles. its like the milk and beef just cretals in the tummy. I have to drink soya milk maybe that will help your son. Thank you for your video.
Thank you for your …
Thank you for your comment. We are looking forward to “patch testing”. We will be heading to Denver in May and hopefully we will be utilizing this amazing advance in medicine.
Thank you for your …
Thank you for your comment. It is emotionally and physically exhausting for everyone involved in the testing. I am thankful for medical advances that should make the process less of a traumatic event. Good luck to you and your little guy.
Good luck to you …
Good luck to you and hopefully all of the medical advances in allergies will help in your future.
My daughter was …
My daughter was recently diagnosed with FPIES. Just to address some of the other comments, the oral food challenge (OFC) is the “gold standard” diagnostic test. However, there is a correct way to perform a series of OFCs. Standard skin testing and blood tests are not useful in the diagnosis of FPIES. Recently, a group at Children’s Hospital of Philadelphia is developing a new test called “patch testing” to screen for potential negative food reactions that may eventually replace the OFC.
my son also has …
my son also has FPIES. His reaction is to cows milk. This is a horrific disorder. My son was diagnosed at 4 months of age and has been on a strict dairy free diet since then. We had him challenged in a hospital at the age of 2 and he failed the test (one of the worst days of my life!) He is now 3 and we are waiting until he is at least 5 to have him challenged again. My heart goes out to you and your beautiful son. I understand your frustration and wish you the best of luck.
aaaaaaaw it is sad …
aaaaaaaw it is sad docs who think there smarter than everyone else hee seem srry wen he said uho after he threw up poor baby
Thank you for …
Thank you for posting this video! My son is five years old and I truly cried when I watched this. So familiar and it just breaks my heart that you had a Dr. who didn’t listen for such a long time and even made him go through a dangerous reaction. My Lil man has asthma and is allergic to peanuts& tree nuts,eggs,dairy products especially milk,berries,bleach. I have worried since he was a baby.
The doctor left us …
The doctor left us and went to care for patients… when she checked on us and saw that he had vomited, she said that he should just keep it on the floor and the janitor would come in the morning. If there was a bucket or a bowl available I would have taken it, but she wanted to “test” the validity of the claim of our sons illness and so she put us in the empty “ill” waiting room in front of the office. The whole situation was horrible, her practice was closed 2 weeks later.
poor child.. Can I …
poor child.. Can I ask why he was being sick on the floor like that???? just things about the spread of bacteria as a bowl or bucket would me more hygienic ?
I feel for you. We …
I feel for you. We were not “challenging” soy here… we were risking a reaction at the doctors office so that the pediatricians would believe our story and take action. We had been trying to tell doctors for over a year and no one would listen. We knew that it would be risky and sad, but worth his improvement.
It is smart to wait on the challenging. We are not doing any until the age of 3.
no, we have not. …
no, we have not. our doctors have not mentioned this, I am not sure if it is used with f.p.i.e.s.
Have you tried NAET …
Have you tried NAET treatment??
my 14 month old …
my 14 month old daughter Adrienne has FPIES too… this video made me cry - we are not challenging milk or soy until age 3.