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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Friday, October 5, 2012


I guess I'll start with the developmental pediatrician. She didn't mention the autism diagnosis so I'm going to assume that it still stands. She said that verbally he is at a 20-24 month level but socially and his play he's at a 12-14 month level. So we need to work on his interaction with other people, which is hard since I cannot just put him in a day care or mothers day out program.
John's OT has started combining his Tuesday therapy with another little boy to see if that helps. The first session did not go so well but we are hopeful.

One week into the trial and NO SYMPTOMS!

The trial.
John LOVES the sweet potatoes now! As long as I sweeten them.... A LOT. :)
I'm okay with that as long as he's eating them. He was eating up to 4oz a day, willingly, with a spoon. No more hiding it in his bottles.

We've had to push the pause button on the sweet potato trial. 
John had started to cough and have increased reflux. He was also showing signs of having difficulty swallowing. To rule out a virus we temporarily pull the trialing food and wait to see if symptoms clear. Once he's clear then we will re-introduce the trial. Once I pulled the sweet potatoes John developed diarrhea. That points to a virus since that hasnt been a typical EoE symptom for John in the past. That doesnt mean that it isnt EoE, just something to take into consideration when trying to decide if symptoms are due to an offending food or a bug. I swear we are the only parents that HOPE that our child has a virus. It's so much easier to deal with a virus or a bug than an EoE flare and failed food trial. 
It's been a couple of weeks now since I pulled the sweet potatoes and all symptoms have cleared up so I'm going to try re-introducing them today and see how we do for another week. That's about the time that we will need to go ahead and schedule another scope for John. He will continue to get scopes every 4-6 weeks while we are actively trialing foods.

So that's where we stand on the food trials.

John has been really stressed out this week because Doug's work schedule changed. He is now home in the mornings but not around to bathe and put John to bed at night.
John has become very clingy, not sleeping well, not wanting to work in therapy and more autistic tendencies are showing themselves. He's rocking more, now even when he's standing he's rocking, or I guess I should say swaying, from one foot to the other. He flaps his hands near his face when he's scared and he's zoning out more when he spins the wheels on his cars. We are working on helping John transition through this change as easily as possible but it's so hard to see him effected so much by something seemingly so small, like this change in his schedule. I'm sure he'll be adjusted, just in time for Doug's schedule to shift again...

I will try to do better in keeping you updated on food trials! I didn't realize it had been so long since I updated!!
So, now I want to hear from you!
I'm thinking about doing a vlog next and want to answer your questions!
Ask me anything about EoE or our life living with out food and I'll try to answer them all in my vlog! 

1 comment:

  1. We know all too well about hoping for a virus when Nathan's showing symptoms. It sounds bad to people on the outside, but all of us living the daily battle with EoE get it completely! :o)