Hey everyone. This post is sorta unusual for me. But earlier today, I recieved a comment from someone in response to my post titled “Eosinophilic Esophagitis.” Sadly, the comment disappeared before I could respond. So I’m going to post the comment, and post my own thoughts. Hope whoever posted the comment is able to read it!
“Thanks for this blog. My 7yrs old son just got diagnosed with EE….there were no apparent symptoms we saw but he had acid reflux since he was 5 weeks old. Finally we could stop his medicine and that is when his doc wanted him to get checked for EE. I am so scared now that we are vegetarian and wheat and milk is all we eat. What doc has asked to stop – those 6 items and milk and wheat is everything for us. We r going to see the pediatric dietitian, What i keep wondering is if we have not seen any symptoms, he has not complained then why get him treated….can’t just go on with it?”
First of all, thank you for reading! I’m glad my personal story is out there for people to relate to and also help understand EE. I read your comment several times to think how I could reply to your complex situation, more complex than my own.
First of all, EE has been known to be misdiagnosed as acid reflux. I should know, we thought I had it as long as I can remember until my diagnosis 4-5 years ago. And once I found out I had EE, all of the pieces finally came together, and I realized I must have had it the whole time. This seems to be the case with your son.
I can only imagine how difficult this will be for your family as vegetarians. When I was first diagnosed, I thought my life would end, because tons of food have these products that are now forbidden to me. It took me at least 2 years to finally find a suitable diet for myself to where I could feel completely healthy. But I continue to make my diet more stricter as producers, and restaurant chains change their ingredients. For me, meat, fruits and veggies are the main components to my diet, and I have rarely broken my diet in the past 2 years. For you, this will be a difficult experience. Consulting a dietitian is a great idea. They will be able to steer you in the right direction. I wish you the best of luck with this.
And to answer your question, I would not ignore the doctor’s instructions. I don’t know your son’s level of pain when he is experiencing a spell with EE, but mimic heart attacks are common, and from personal experience, I thought I was going to die. The medicine that has been prescribed to me, and my diet has saved my life, and my doctor has told me that is the only way to prevent possible irreversible and even more painful damage. Something to think about really carefully.
If you are in fact reading this, I wish you the best of luck! Life does go on from this, and it will eventually just become his way of life in the months and years to come. I do believe that in his early age, he will be able to get a full handle on this, and with your help, he will be free from years of pain that I experienced because of a late diagnosis. Remember, the steroid FLOVENT and a strict diet is the most efficient and less painful way to cope with this.
Hope to hear good news from you soon!
-Tyler