About Me

My photo
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.

Grab my button!


Tuesday, October 16, 2012

Thursday, October 11, 2012

Scope Number Four

We now have the date set for John's next scope to check and see if we can officially call sweet potatoes a safe food! 
Hospital policy says that Dr. M has to see John with in three months of a scope so we have to go in the day before the scope for a visit. We also have an appointment (FINALLY) with the registered dietitian that works in Dr. M's clinic. 
Since all three of John's appointments over two days are early in the morning and we live over three hours away I have asked to be put on the waiting list for the Ronald McDonald House in Greenville. 
I hope that I will be able to drive up with John on the 6th and come home after his scope on the 8th. Hubby cannot get off work so John and I will be making this trip on our own.

I got some really great questions for my vlog and I'm really excited to answer them.
I tried to do the vlog yesterday and found out that my webcam only records in 7 minute bursts so, I either have to talk faster, shorten my answers, or have Hubby splice two videos together. I hope I will be able to post it soon. So, thank you for responding!!

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!