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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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Thursday, May 17, 2012

Patch Testing

Allergy testing!!! Seriously, No fun! I've had a prick test done and while it doesnt actually hurt, it's not pleasent either and I was an adult when I had it done. I can not imagine how my baby must have felt at 11 months old getting that done and then again this year.
So we had another prick test done last month with a new allergist and he only reacted to beef and milk.
This new allergist does a second round of prick testing using real fresh food in place of the serum because EE kids react differently to the tests. He also does a patch testing using fresh food that stays on the skin for 48 hours and is then evaluated after 72 hours.
John had both of those this week.
Dr. G. tests the foods that John "passes" on the previous test, so whatever John did NOT react to on the first prick got tested again with real food. He did not react to any of them so all of those foods were put on patches on his back for 48 hours.

So these were put on his back on Monday morning and I removed them on Wednesday morning, careful not to rub off any of the makers, then took a picture to email to the allergist.

When I took off the patches I saw.....

the only redness was from the adhesive....

Our appointment for Dr G to look at them was today at 1pm. I got John up and dressed and checked out his back. Still nothing. Not even a little redness...
 I want to say I was happy about this but I wasn't. I was very disappointed because no reaction tells us NOTHING! Just because he doesn't react to an allergy test does not mean that the food is safe for him to eat! If he reacts to nothing on the test that just means that we have more to trial, not knowing how his body will react. At least a reaction on the tests gives us a narrowed down list of things to try first with the highest probability that the first few foods he trials will be safe.
So an hour and a half later we get to Dr G's office. He pulls up John shirt and there is a BIG red spot on his back! The exact shape and size of one of the patches! He had a reaction!
He also had some smaller reactions that I didnt notice, apparently.
He tested positive to beef, soy (the big one), and oats.
So now we know not to trial milk, beef, soy, oats, strawberries, navy beans, or english peas first.
We are going to send some blood work out to test for the other foods that he has previously passed like corn (that I'm 95% sure he's allergic to), rice, peanuts, and eggs. Once we get all that back from the allergist he will give us a list of foods that should be safe that we will take to the dietitian, who will make a meal plan for John supplemented with formula as needed for total nutrition.
We will stay on that diet for 6-8 weeks before having another scope done to see if John is okay on those foods, unless John has any symptoms.

Now, I'm not familiar with the food trail protocol but I know we will become experts soon enough, so I don't know exactly what we do if he starts having symptoms while we are trialing more than one food. We will get all that information before we start and I have a WONDERFUL resource and support group full of the most amazing women and mothers I have ever met! They are the trail blazers for EoE and have done all the grunt work, and found out what brands are safe and what to do when things go wrong. They have figured all this out the hard way, by trial and error. Because of them I don't have to do that. I don't know what I would do with out them. They have been my safe haven and my life line.
Thank you girls!

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