Wednesday, November 27, 2013

Why Did We Do The Baked Egg Challenge?

Seeing as I have gotten this question about 1001 times in the past 24 hours I figured this was the easiest way to explain the "what?" and "why?" of yesterdays appointment with Reed's allergist.
As most of you know, Reed has had some pretty severe anaphylactic reactions to egg. He hasn't ingested egg in over 2 years because of this. I fed him scrambled eggs for the first time when he was 14 months old, and he went into anaphylaxis.
 He did have a run in with some raw egg over a year ago that landed him an ambulance ride. You can see those pictures here
Anyways, some of you probably know that we were told he could try the baked egg challenge.
First, what is the baked egg challenge?
No, its not throwing an egg in the oven and then feeding it to him.
It means baked foods that contain egg excluding egg casseroles.
Muffins are probably going to be the only thing we use for a while.
Here's the story: if you bake an egg with other ingredients at a certain temperature for a certain amount of time it breaks down all but one of the proteins that cause reactions in allergic kids. So the test is to see if the kid can handle the remaining protein that does NOT break down under heat. Some can, some can't. Based on Reed's track record with food allergies I didn't expect him to pass.
He passed...sort of. He still got some little red rashy hives on the bottom half of his face but there was no wheezing, no puking, no swelling of the face. So his allergist decided we should go ahead and give him teeny tiny amounts of muffin every few days. Like 1/4 of a muffin.
"Why would you even bother?" some might say.
Well here's the "why".
This feeding of small amounts of muffin containing eggs is supposed to build up an immunity to egg resulting in less severe reactions if he were to come in contact with say, scrambled or raw egg in the future. That's the idea anyway. Sure, he may never be able to sit down and eat a breakfast of fried eggs and might not even be able to have an entire piece of cake (although this might actually be possible some day in the distant future) but if I can do something to make a reaction less life threatening, I will do it. Even if it means making batches of muffins and freezing them in wrapped up bite size pieces. These muffins are more medicine than food right now. We are trying to teach Reed's immune system that egg is good and not bad. Will it work? Well statistics show that most kids do really well.
He did spend last night curled in a ball with stomach pain so we were instructed to have him eat even less for a while and see how he does.
Honestly I'm surprised and thankful that the test ended well and not across the street in the emergency room. When he took that first bite and had to be watched closely for the first 15 minutes I was so nervous. When the first little hives showed up around his mouth, my heart sank. But nothing worse came of the test.
I don't care if we ever get to eat "normal", but if this can make the world just a little safer for Reed than I will do whatever it takes.
Originally, Dr Smith said we could do the baked milk challenge soon but since Reed only half passed the egg test we are waiting until next year to even talk about that again.
So there's the "what" and the "why" and hopefully it even made some sense.
I think that this whole thing has actually made my life MORE stressful. I have to keep eggs in the house now. I have to cook with eggs. There is the potential of getting raw egg somewhere which is extremely dangerous. Its a risk but the possible benefits outweigh the risks here. At least for now.
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Wednesday, November 20, 2013

Inside the Mind Of An Allergy Mom

Normal to us is nowhere near what normal is to every one else.
2 days ago I was driving through west Nashville, all happy go lucky, when I heard Reed cough.
My brain said: asthmapufferohcrapilefttheemergencymedbagathome!
no epipens
no Benadryl
no inhaler
Then the panic set in.
I was 30 minutes from home.
I still hadn't gone to the store I needed to go to.
I decided to skip it and try again another day.
I pulled into Ashland City Walmart because I NEEDED diapers. It was a dire situation. The diapers AND the epi-penless state of our little family at the moment.
I made Reed sit in the buggy with Hank because my nerves couldn't handle the thought of him wandering off for just a second and touching something dangerous.
Most of you can walk through a grocery store without a care in the world.
Not us.
When you have forgotten the life saving medicine that you carry with you everywhere, (and I mean everywhere) every container of yogurt, every bag of trailmix, every prepackaged snack is practically jumping out and exploding in your child's face.
Every human in the vicinity is covered in peanut dust and scrambled egg remnants.
That's just how our minds work.
So while you all are prancing gleefully through the grocery store without a care in the world, remember that somewhere is a mother with a watchful eye who views you and your snack-eating child as a major threat.
Obviously we made it home without we do on the days we have our medicine. But it was slightly terrifying. I felt I had failed as a mother.
That if something were to happen somehow that I was the one who had hurt or killed my child because I couldn't remember the very thing I have had with me everywhere I go for years.
I don't remember what it is like to go into a grocery store without fear in the back of my mind.
If its fall, the fear gets pushed to the front of my mind because stores seem to think its cool to have giant bins of nuts out in the middle of the store.
I wouldn't know what to do with myself if someday I could go into a friends house and not see landmines in every corner of their kitchen or attached to their children.
Family parties might cause stress for some people because...well...its family. Family parties for us cause stress because food.
Food has to be everywhere.
I hate food.
Food and I have never had a great relationship but it has only been worsened by the deadliness that comes with it now.
Today I was told by the kids' new allergist that Reed is ready to start food challenges.
This means that the very things that have sent him into anaphylaxis, the things that have caused so many tears and stress, are now going to be baked to a temperature high enough to break down the proteins and then I have to feed them to him.
I don't know if my poor heart can handle it.
I don't know that I can even begin to explain how terrified I am.
I have 1 week to mentally prepare myself to walk into that office with my little man.
Can someone please come hold my hand?
It could go extremely well and he could be on the way to becoming desensitized to normal food that nobody else thinks twice about eating.
It could also end badly.
It could end in a bad reaction that sends him across the street to the emergency room.
So while probably none of this makes sense to you, can you just please pretend it does so I feel like I'm being understood?
K. Thanks.
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