Saturday, March 5, 2011

Reflections and Clinical Studies

A year ago today our lives changed drastically when Luke had his anaphylactic reaction to peanuts. I've done some thinking lately about how our lives have changed. Some for the not so good, some for the good.

1. Things that used to be a non-issue, are now an issue. No longer can we walk into a restaurant, any restaurant, and order without worry. Eating out has to be planned ahead. Research done online, calls made ahead of time to check on the safety of food prep. And if necessary, a meal packed and brought with us to feed Luke if there are no safe options. Play dates, birthday parties, family gatherings all come with a fair amount of stress, planning, and general unease.

2. Because of number one, a good thing has come about. I have discovered that I can make pretty much anything we want at home, from scratch. I've learned how much fun it is to look for recipes and try them out. I've become comfortable with baking from scratch, and making my own bread products. I've learned how to exchange an unsafe ingredient for a safe one.

3. I've become a more thoughtful person. When we took Cody to the Monster Truck Jam for his birthday, it was the first time my husband and I had been somewhere special with just Cody in quite awhile. While standing in line waiting to buy concessions, I told him he could have whatever he wanted. I told him he could even get a package of peanuts if he desired. As soon as those words came out, I was thinking, what if a peanut allergic child is sitting near us? How would I feel if Luke was here and someone sat next to us eating peanuts? This isn't something I would have considered in the past, but I do now, and I was thankful that Cody didn't decide on the bag of peanuts. There are other instances - I'm careful that Luke doesn't leave behind any fallen Goldfish crackers. I would hate for a dairy or wheat allergic child to find one and pop it in his mouth before his mom could stop him.

4. I have met some wonderful people through blogs and message boards such as Kids with Food Allergies. And through them I've learned more about food allergies, and how to live with them, than I ever thought that I would.

5. I have learned that some people will stand behind you no matter what, listen to you, and not jump to assumptions. Some people however are the complete opposite.


As much as I wish that Luke didn't have food allergies, I am thankful that we have been blessed with a wonderful allergist. I am thankful that I have the tools that I need to protect him. Hopefully this time next year I will be posting that we went a whole year without another serious reaction.

Which leads me to my next topic. We are lucky enough to be fairly close to Duke University (about 5 hours). Duke is one of the to major hospitals on the East Coast that does peanut desensitization studies. Johns Hopkins University Hospital is closer, but will only take people ages 12 and older. Duke's studies typically include children over age 1. I recently found information about a current study that they are recruiting for. I was excited as I read over it. I would be more than willing to make bi-weekly trips to Duke if it meant helping Luke. Then I got to the exclusions criteria...

History of severe anaphylaxis to peanut as defined by hypoxia, hypotension, or neurological compromise (Cyanosis or SpO2 < 92% at any stage, hypotension, confusion, collapse, loss of consciousness; or incontinence)



.sigh.

The day of his peanut reaction he suffered from hypotension (defined as abnormally low blood pressure). His skin and lips took on a bluish hue, so hypoxia may have been an issue. He lost consciousness multiple times that morning. His oxygen level when we arrived in the ER was in the low 60's. Going through the various trials, it looks as though anyone that has had a serious reaction is not eligible. My plan is to contact Duke University and see if this is always the case, or if there is the possibility of something he would be eligible for.

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