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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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Wednesday, March 28, 2012

Second Endoscopy

Tomorrow is the big day we've been waiting for!
John's second scope is scheduled for 7am tomorrow.

We will find out in about a week (or less) if John's disease is in remission or not. Having been on nothing but the elemental formula for as long as we have he should be clear of all eosinophils. He has still been having some symptoms but they could be related to other things such as swallowing too much air, eating too fast, or it could be that his stomach isn't emptying like it should. 
If everything comes back clear we will have to figure out what it is that's causing him to still throw up occasionally. But we will also get the green light for food trials!! YAY!!
If the scope does not come back clear then I guess that will mean that John has a more severe case and he is being effected by the environment. Smelling food, touching food, that sort of thing. That probably isn't the case because that is rare but it is possible. John's Dr is very confident that his scope will come back clear.

This is Dr. Markowitz

We are leaving tonight when Doug get's home from work to drive to Greenville since we have to be at the hospital at 7am!! 
Then we get the wonderful job of sending our son off with strange nurses and sitting to wait.... and wait....

I want to give a shout out to my support group! I seriously have NO IDEA how I would deal with all of this with out you. I appreciate you guys more than you can know!

2 of the Moms and their kids from our EOS Support Group

I hope I will be reporting back in about a week with some amazing news!!! 

Tuesday, March 20, 2012

weight check



Here are a few pictures from John's 15 month photo shoot

Tomorrow is the big day in Greenville!!!
We are so excited. We might also get to meet some other families effected by Eosinophilic Disorders.
I've heard such amazing things about Dr. M. and I am anxious to finally meet him.

Friday, March 16, 2012


It's been a long time since I've posted. That is because I've not had anything to post about!! It's horrible but we are just sitting around waiting now. We are still doing the total elemental diet and yet John is still having retching, coughing, gagging, vomiting episodes! They are much less frequent but he should not being having ANY EE symptoms at all at this point. I really am hoping that Dr M. can give us some answers. Maybe John has some environmental allergies that are affecting his EE?

Also we are fighting again with getting him in to see an occupational therapist to work on his motor skills. They only want to work on his eating but we do not have any acceptable foods so there really isn't anything they can do in that area. I don't know why they don't want to work on his walking, talking. and holding his own bottle. Just to name a few! We have another weigh in on the 20th and our long awaited appointment in Greenville is the 21st!! Getting close now!!