Thursday, April 25, 2013

Can you believe it's been 3 years?

Late on Sunday, April 21st, it dawned on me that 3 years ago Lucas was diagnosed with EoE.  It's been an incredible journey and I know that it will never end until a cure is found.  We've had our good moments and certainly our bad moments but we wouldn't be where we are today without each one, good or bad.  

I remember very vividly taking Lucas to Kosairs Children's Hospital for his first scope.  This was after basically twisting our local GI's arm to have it done.  Lucas was 2 1/2 years old.  None of knew what to expect.  Lucas was given Versed to help calm him before the scope.  The results came back with 80 eos/hpf.  He was placed on swallowed Flovent and nice trip to the allergist.  Allergist results came back IgE reactive to wheat, eggs, and several environmental allergens.

It would be another year and 3 months before he was scoped again.  This time after the insistence of our local Allergist, to get a second opinion at Cincinnati Children's Hospital.  We spent a very long week up there.  Lucas was scoped, allergy tested again, had an impedance probe, etc.  We met with Dr. Francoisi and before leaving decided to switch Lucas' care up to Cincy.  It was the best decision we've made in regards to Lucas' care.  We left with a treatment plan.

Scopes #3 and #4 were pretty bad and very disappointing.  Scope #3 was not as bad as #4.  Scope #4 felt like a kick to the gut.  His eos count was over 100.  This is when Dr. F and I decided to give the Pulmicort slurry a go.  Clearly the elimination diet alone was not enough.

Around this time last year, Lucas was in between scopes #4 and #5 that we learned Dr. F was leaving Cincy.  Luckily, we were able to have and meet with him on scope #5.  At that time, Lucas was finally showing positive signs that the treatment plan was heading in the right direction.  But he still had a ways to go and Dr. F felt we would be better with Dr. Putnam instead of the PA.  Again, best decision made.  Dr. P picked up right where Dr. F left off.  

Scopes #6 and #7 provided the best news to date for Lucas.  Both scopes came back clear in his upper esophagus.  The combination of the corticosteroid, PPI, and elimination diet had proven successful for Lucas.  

Lucas will have scope #8 in about a week, this scope will determine if the food trial he's been has been successful.  Lucas has been trialing peanut butter and while he's not been symptomatic, we don't know if he's been reacting on a cellular level until the biopsies come back.  We are hopeful that he will be able to keep peanut butter and to begin a new trial.  

I also want to mention that I belong to several private FB support groups for EGIDs.  When he was first DX'd, these groups were overwhelming and I felt intimidated sharing our story.  But over time, I began contributing to these groups.  Without these groups I don't know how we would've coped.  We are spread across the nation but we are bonded by our children's disorder.  Many of these families I call friends.  I can lean on them when I need to and they can do the same with me.  There's no judgment, no right or wrong approach to our treatment plans, just compassion, support and love.  I'm proud to be apart of these groups.  


  1. I just came across your blog from Pinterest. I'm so happy to have another blogger about EoE. My little boy has it too. He was diagnosed with it last April. He is 20 months. We're heading to the Denver clinic soon. Check out my blog and hopefully some of the recipes can help you or maybe you can just get a little laugh from it.

    1. Thanks for finding us. I'll definitely check out your blog. Good luck at the Denver clinic. I've heard wonderful things about them. We love Cincy and so glad we are there. It's definitely an adventure our children and us go on with this disorder.