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Saturday, October 24, 2009

Addison

I'm sure that most of you who read my blog regularly have already heard on Tuesday night we had basically the same event happen that was described in my previous post. Chris said he liked how I detailed things in that post, but I don't think I can relive it again, so I'll just give you the facts without all the emotion - sorry if that is boring!

Addison has been diagnosed with FPIES- Food Protein Induced Enterocolitis Syndrome. This is a very rare allergy of soy, dairy and rice - possibly more later. Unlike an anaphylactic allergy that is responsive to epinepherine (epi-pen) FPIES is not. If she ingests, we will have episode like the last two and immediately must call 911. Her BP goes low and she needs IV fluids, etc. at the hospital to recover. In talking with the allergist Friday, it appears that Addison is on the extreme end of FPIES - it is really scary and dangerous. I will become the organic allergy mom! One encouraging note, some kids grow out of FPIES around 3 - that's our prayer.

This journey is not over due to the metabolic tests. Initially the genetics doctor did not think her high levels were worrisom, but they continue to be elevated. After re-testing Friday morning, her pyruvate and lactate levels are elevated and in the critical levels. A Genetics doctor discussed with us keeping her and beginning work ups to see what is going on metabolically or going home, resting and seeing/talking to him on Monday - hardest decision I've made, but her little body had no more veins to poke and she needed a break (so did momma and dadddy). He feels that the levels should have normalized in this time frame. This is all very confusing, but hopefully we will have more answers soon. We were instructed to return to the ER if she presents with any atypical behavior. Pray for her safety and peace! Thanks for the prayers! We know God is in control!

Over the past two weeks God has been showing me how He worked this out. I'm not quite ready to post of all God did to prepare me and provide the best care available to Addison, but soon I will detail it out - it is so awesome how God goes before us and prepares the way!

2 comments:

Cynthia Davis said...

Sara, I wish I was there to give you a huge hug. But know that we are praying for you guys. Praise God for His sovereignty because He has a plan that is bigger than our plans. I hope you know you can call me if you need someone to talk, cry, or laugh with! Love you Sara!

Hi, I'm Ginny said...

Sara we have all been praying for Addison. Hopefully you will have all your answers soon. I'm so glad you have wonderful people surrounding your family and caring for Addison. You are so strong!