Got some exciting news about the biopsy results! Nathan has ZERO eosinophils in his esophagus! That means the current treatment is working: top 8 allergen elimination diet, Pulmicort slurry, and Prevacid.
We are excited to know that the treatment is working for Nathan, but we are now questioning what is working exactly. Is it the fact that we've eliminated dairy, egg, soy, wheat, tree nuts, peanuts, shellfish, and seafood from his diet? Or is it the fact that we are giving him the steroid? Mark and I are going to talk to Dr. Williams and Dr. Irani about this dilemma we are in now. I am wishing we had only done the top 8 elimination first, because for some kids this works and they don't need the steroid. Of course, if it's not needed to control Nathan's EE, then we don't want him on it. He is too young and has many years ahead of him and I don't like the idea of him being on a steroid his whole life.
There is no known cure for EE at this time, only life-long treatments to control inflammation and symptoms. If we were to stop treatment today, his eosinophil count would climb and his symptoms would inevitably return. I don't know what our GI and allergist's ideas will be with this way of thinking and I don't want to go backwards, but I am wanting to take away the steroid, continue trialing foods that are not the top 8 allergens and then see what his next scope looks like. To me, that's the only way to find out if the steroid is helping to control things, or if his diet is controlling things for now.
We follow up with Dr. Williams on July 1st to check on his g-tube and how it's healing. We will talk to him about the above idea then. We are also going to get him to write a referral for Nathan to be able to go to Food Therapy at the Children's Hospital. Nathan is still having quite a bit of trouble eating foods that are thicker than pureed baby food. I was thinking it was inflammation, but the scope ruled that out. So now we are thinking that Nathan is just behind on eating different textures of foods because right when he started eating them we found out about this EE diagnosis and took all of it away from him. So he has never really learned to eat foods with a variety of textures. Food Therapy will help him to re-learn this.
Nathan is still doing great and is just as sweet as he can be... he must have run up to me 50 times today to give me kisses! It just makes me melt when he does that!
Here he is this morning checking out his new tube:
He is so cute! A big congrats! on the 0 eos count. I had the same question though after L's last scope. Which piece of the eos puzzle was working? Love you guys!
ReplyDeleteThanks! What did you do to figure it out?
ReplyDeleteI'm still so excited to see/read/hear ZERO EOSINOPHILS. How far out are they booked for FT? I say you (and DH) do what you feel is right. You are his parents and have to deal with reactions firsthand so you get the biggest vote after weighing the pros and cons of each change.
ReplyDeleteI was telling T's GI about N's clean scope and all the changes between the 1st and 2nd scope. Let's just say he shares your frustration about not knowing what worked. (I thought I'd reassure you that even a doctor understands the challenges associated with EE, from both a professional and parental perspective, and how even small modifications can change the whole game.)
Very cute pictures.
p.s. Yay for 50+ sweet kisses.
p.p.s. I'm trying to give him squeezes via the computer. It's not working. :(
I'm glad his g-tube insertion went well, and hooray for a clear scope. Here's hoping that the elimination diet alone is what got him there. :)
ReplyDelete