As some of you may know, I belong to a website that grew out of the wedding planning website, theknot.com. This website spawned a fabulous independent website of lots of local ladies, single and married, with kiddos and without, and it is a great source of information and entertainment in my life. I've met so many wonderful ladies on there (some of whom I socialize with in real life and many others that I hope to meet up with soon!) and it sounds crazy, but there's so many of us, so we can't all be nuts, right? (I mean it's not like Chat Roulette or anything).
Shortly after the birth of Haley O. I started emailing with the lovely Stacey. She had a little boy just two weeks after I had HOC and we bonded over the trials and tribulations of those early days. We have stayed in touch as our kiddos grow, and she is a total doll of a person. Someone who is just way too sweet to normally be my friend, so I'm glad she met me on the interweb first, then when we finally met in person, she was just too polite to get rid of me.
Anyways, she has a very handsome little boy named Sam. Sam has a condition called eosinophilic esophagitis. You can read a little bit about EE here, and see Sam's personal page at CaringBridge. Basically, Sam has an allergic reaction to almost every food he eats. This can include everything from repeated vomiting to irritability. In other words, just keeping him nourished and happy is such a huge undertaking, and something most of us take for granted every day. We barely give a second thought to grabbing our kids something at the drivethru. Everything Sam eats has to be carefully monitored so it doesn't cause him any distress.
This is a rare condition, but obviously one that has a huge impact on the day to day lives of these children and their families. To help raise awareness a group of parents of children with EE are holding a "Eat Like Us for a Day" challenge this Friday, May 14th. The goal is to limit your diet to foods that are free of the major allergens-milk (in all forms), egg, wheat, nuts/peanuts, soy, and seafood. You'd be surprised how many foods contain those items in some incarnation or another.
So, in honor of Mr. Sam, I will be taking the challenge for the day. Just to see how tough it will be to not aimlessly graze in my kitchen and have to plan everything that I eat in minute detail (I will update after I make it through the day). I know that my blog is usually occasionally funny and snarky, but please take a minute to consider what these families are enduring, even if it is just to take a minute to be thankful for your own health.
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Ohmygosh, Olivia. That sounds EXACTLY like Nathan. Nathan has been diagnosed with Sensory Processing Disorder. Nathan has occupational therapy twice a week and is doing better. Until he was about Haley's age he vomited at least once/day. They haven't been able to do an upper GI or swallow test because of his sensory issues. But, they do think it may be an esophageal issue because he gags on most foods that don't dissolve easily. He doesn't eat any fruits, veggies or meats. Crackers and cookies make up his diet. But, I read your friend's story and it sounds all too familiar. Hopefully the doctor will think Nathan is ready for testing soon. But, I feel for your friend!
ReplyDeleteNathan's Mom,
ReplyDeleteWhere do you live and does your son see a good GI? I'm the coordinator of the ATL/N.GA Eosinophilic Disorders Support Group and we are the ones hosting the above mentioned event. Free free to contact me danistartt@yahoo.com