Living With Eosinophilic Esophagitis
Our 3 year old son has a rare non-curable food allergy disorder called Eosinophilic Esophagitis in which his immune system attacks the food he eats thereby attacking his body internally. I’ve wrote about his disorder very briefly before. However, I’ve never went into full details about how his disorder affects him and our daily lives mainly because I don’t want it to seem a bigger issue than it is.
But today, unlike most days, I feel the need to spill my guts.
It breaks my heart daily to see my son go through this but he is a tough little guy. Yes, I’m aware that things could be worse but knowing that doesn’t make it any easier. Having a child with EE is not easy. He does not have a normal life. Among other things, he can’t eat at most restaurants, he will never have a school cafeteria lunch, and he can’t indulge in most birthday party cakes & goodies for fear of getting sick. Our son knows there are many many foods he can’t eat and that food list will possibly grow as he gets older.
Most of your kids will probably ask, “What’s for dinner?” while our 3 year old son will say, “Will I puke it?”.
He is so accustomed to throwing up (he did it several times per day for over a year before his complete diagnosis) that most of the time, unless it comes on suddenly, he will go to the bathroom-puke, flush, repeat, puke flush, repeat. It is again heartbreaking to say the least. Now with the help of a restricted diet and steroids this only happens once or twice a week. Sometimes we will get lucky and he will go for 3 weeks straight without any gastrointestinal sickness.
When trick or treat comes along he won’t be eating much candy like most of the kids. I will go through his bag just giving him a few things to sample while his 6 year old brother devours more than his fair share.
Our biggest challenge right now is food restrictions and modifications. I want to change the way our entire family eats just for him. It is something that will take some time. However, I know total restrictions are impossible. For instance, our 3 year old is severely allergic to our 6 year old’s favorite foods.
We are very thankful for our son and his health. But today I want people to be made aware of this disease and it’s effect on families. Click here to view a video to help you understand more about these disorders. In the near future I’m hoping to organize a fundraiser on this site to support EE and APFED.
If you have a child with a life altering disorder, any of the EE disorders, or food allergies I’d like to hear from you.
[...] Day #23: At The Hospital Posted by Amanda | On: Jan 29 2012 Our 7 year old has eosinophilic esophagitis. He has to endure endoscopies quite often. This was surgery 7 or 8. It could be number 9. At this [...]