4.27.2010

"Sophie Safe"

A phrase that has become widely used in our home and in the homes of our family. "Sophie safe" has become synonymous with anything peanut/tree nut/coconut free.

"Sophie safe" has recently come to envelop so much more.

Easter Saturday we had gone to an egg hunt and had a large BBQ lunch. When we came home, we had a small dinner of cinnamon raisin toast, cut up apples and oranges and chocolate milk. Then we dyed eggs.

Around 8:00pm Sophie started to swell. We haven't seen the swelling in some time. We pulled out the Benadryl and gave her a dose. She became tired...which is her instant reaction to Benadryl...and we put her to bed. We did our normal Easter evening activities after the girls had gone to bed and the hubster was watching a movie and I was reading. I knew we would be getting up early and I had better go to bed (midnight...we are both night owls). I was turning down the bed in our room when I heard "cough wheeze uhhhh" coming from Sophie's room. I ran in and found her sitting up in her bed, swollen and unable to breathe. I yelled to Jeremy to come NOW and he saw her and thought the same thing I did. Head to the ER.



(Sophie minutes after we were done with eggs. You can see the
hives and swelling, especially in her eyes)


Luckily we only live minutes from the nearest ER and at midnight, that drive is much shorter. Jeremy drove and I sat in the back seat with the epi-pen ready just in case. Did you know that if you walk into an ER with your baby wrapped in your coat at midnight and say on your way in "She has a peanut allergy and she can't breathe" that they open the doors and let you in ahead of everyone in the lobby?

Super long story short, they treated her with some mega-steroids and more Benadryl and we were finally allowed to take her home at 3am, just in time to wake up three hours later. Easter was spent with both of us in a state of zombie-picking-at-each-other-because-of-sheer-exhaustion. Not our most favorite holiday ever. Anaphalaxis is crap.

The ER doctor told us to follow up with our allergist Monday. I left a message on Sunday night and Monday morning at 8am on the dot, she called. They scheduled us for two weeks later...enough time for Sophie to get the Benadryl and steroids out of her system. We went in and did the skin prick test. They retested for her previous allergens as well as everything I told them the night she had her reaction.

Our new laundry list of allergens (ie. the kill list...so called because she HAS had Anaphylactic reaction to both peanuts and eggs. BTW, for future reference, they think she will not outgrow any of them except for the cinnamon and maybe soy and casein...we've had a lot of questions regarding that.):

Egg yolk
Almond
Brazil nut
Cashew
Coconut
Hazelnut
Peanut
Pecan
Walnut
Orange
Soy bean
Casein (a milk based-protein that is found in most food products)
Egg white
Cinnamon

The skin prick test was awful. Sophie screamed and cried. I wanted to cry with her. Because the list of allergens and her reactions were so extensive (Sophie started developing hives in front of the doctors eyes and was administered an adult dose of Benadryl in the office) I had to take her in for lab work. Three nurses and myself had to hold her down. I had a tender neck for several days due to her head butting me. I think it's official that she is traumatized by doctor visits.

Monday after it was all over, I took her home. All she wanted was orange juice. I cried in the car. I can't give her her favorite juice now! So we stopped at a gas station drive-thru and I purchased her an apple juice instead. When I turned around to give it to her, she was out cold. Quite possibly from the massive energy exertion or the Benadryl or a combination of both. She slept for five hours that afternoon. I didn't. I came home and started researching. What could I feed my baby??? I wasn't going to fall apart over this. The doctor had warned me that I was going grieve over this and I needed to let it come. No way, I thought. I am going to just do this and live it. All I did Monday was read and write and bookmark. I went to bed that night completely confident in my new knowledge and overly confident in my abilities. I shouldn't have done that...set myself up for a fall.

After a night of complete restlessness I woke up. Not feeling refreshed. I came into the office to check to see what the weather was going to be later since spring here is so unpredictable. I thought I would check my bloglines and wouldn't you know it, The Pioneer Woman was giving away a mixer. Her question was "If you could have one wish granted to you, what would it be?" As I typed in my answer "For my baby to be able to eat food without worrying that her next bite might be her last" I lost it. I spent all day Tuesday in a dark, dark place. This diagnosis is completely suffocating and makes you feel like you can't breathe. All of her life came rushing in all at once. Preschool snacks, Nursery and primary snacks, Kindergarten snacks, field trips, sitting on the target table at school, Activity Day camp, Camping with friends and family, family vacations, family parties, dating, girls camp, going off to college and perhaps a mission, dealing with in-laws who are skeptics. All of it came down on me. When you are in the thick of what my husbands aunt calls "prison" you don't realize that "one day at a time" will come and that's how you will have to live. It is the most lonely, crushing place. I stayed in bed all day except for when my kids had to be kicked off to school or when I had to feed them a meal of cardboard, sticks and twigs.

Tuesday passed. I was alive when I woke up on Wednesday morning. I kept telling myself it was going to be a great day. It was.

Then Thursday came. I took Tess to school and Sophie and I went to Costco. Through all of my "research" I learned that a case of rice milk at Costco is vastly more inexpensive than any other store. We went and stocked up on organics that she could eat and rice milk. All the while I was telling her she couldn't have samples because they would make her sick. Then I promised her she could have a soda when we were done. Because if you can't have anything else, why not good old-fashioned high fructose corn syrup? We checked out and I purchased her the soda. Sophie and I have a tradition when we go to Costco. We treat ourselves to a soda and a slice of pizza that we share. Well, cheese is on pizza. I didn't think this trip all of the way through...obviously. Samples...pizza...a child who has had to stop her way of life cold turkey = brilliance. We passed cute little family's blissfully eating their hot dogs and pizza and living in a life free from food threats. Sophie said to me "I want lunch. Can we have our pizza?" To which I told her no, we would go home and have a yummy lunch. She was so frustrated at this point. I could see it on her sweet face. In her two-year old head I am a big meanie who has ruined everything. In her moment of frustration, she hucked her soda at me. It hit me and bounced onto the floor where it landed in a splat. I just stood there, not knowing what to do. Seriously. About what seemed like ages later, I picked up the cup, threw it in the garbage and turned to the receipt man and said "I'm sorry." and I burst into tears and walked out.

Since then it's been an up and down roller coaster. My big girls are so sweet. They have been so supportive of our new lifestyle. I have so many things to post about how we have turned our lives upside down to make sure that Sophie will thrive and eat and most importantly, live. First of all, I needed to get this out there. "Sophie safe" has taken on a whole new meaning. It's not just a few precautions anymore. It's a way of life.


14 comments:

Ryley @ That's My Family! said...

Oh I SO SO SO know what you are going through. And I am SO sorry.
Right now Miles only has 17 things he can eat.
I guess we are almost blessed that we have known of his allergies from the very start so we have never had to give anything up.
but I am still so sorry... It's hard. Its definitly a greif process.
I break down FREQUENTLY thinking about his future and how he can NEVER ever have a "normal" life.

But you know what? They are here, we still have them. They dont have a terminal disease. We have them. I remind myself of that daily.. He is still here and I still have him...

It doesnt get easier.. I'm sorry. I wish I could say it does.

If you ever need anyone to talk to about it.. I'm here! :)

Ronda said...

Oh Steph, I so cannot imagine what this transition is like. I am so sorry. I spoke to my friend who's son has a laundry list of foods he can't eat as well, she said that she would love to talk to you. If nothing else than to give you some insight. Hopefully she can give you some recipes that are Sophie Safe as well. I will text you her phone number. Love ya, hang in there. I have been thinking about you and your cute family.

michelle said...

All I can say it that just sucks! My husband has celiac disease so he can't have wheat. I have to say it has gotten easier with each passing year, labels are better, supply is better and it does get easier. good luck!

Heidi said...

I am so sorry to hear this. Food allergies are so hard. She will grow up and know what is "Sophie Safe". You have a great support system around you and I know that they will do whatever you need them to do to help you and Sophie in this.

Amber said...

I'm so sorry! We've recently taken artificial colors out of our diets to see if it helps one of our girls and I've been so frustrated at how hard it is to keep them from being fed at every turn! Seeing that list made me tear up for you. But if anyone can do this you can. You're an amazing mom and will do great.

Jenn said...

Wow-- that id horrible. And that feeling of them letting you in before people in the waiting room-- suckiest feeling in the world! You realize how bad things are when you aren't placed in a line don't ya. Hope you get things worked out very soon.

Sabra said...

I'm so sorry. When we had to do that, for just a very short while, with Seth is was miserable. I can't imagine how much harder knowing yours is a lifetime of it. But I know there are a lot of resources and support groups-online and in real life. Even in my tiny town there is a mom group for kids with allergies. Good luck to you and Sophie. And hugs.

Lucky Larson's said...

give yourself permission to rant and rave when needed! You are dealing with difficult stuff--and all to keep your child safe! what a good mom you are!

Ruth of Best Allergy Sites said...

I came across your post through google alerts in my email box.

I'm so sorry to hear you had this horrible experience. My son was diagnosed at age 2 and he is now 7. He is allergic to peanuts, tree nuts, egg, sesame and soy.

I actually think that with time, education and support--it does get easier.

Hang in there. It is overwhelming and hard. I know. But you will and can make it through.

There is a great online community of food allergy moms and adult sufferers through facebook, twitter and on blogs. There are great online support forums and AAFA (Asthma Allergy Foundation of America) has face to face support groups in some areas.

If you ever have a question or need some support--feel free to email.

Libby said...

I'm so sorry you've had to become one of us allergy moms! You're right, it really is a lifestyle. Hang in there!

itybty frog said...

This just breaks my heart....for little Sophie, for you, and your family. I am so glad you know all the things that will make her sick so you can protect her. I hope the new doctor you are going to will be able to help.

Do you want to come over for some WATER sometime? :)

The Lazy Organizer said...

That sounds so tough! It's difficult to change the way you eat so drastically. Your situation is even harder than mine but you can do it. Good luck to you!!

okasaneko said...

It's nice to see and hear about your family again, albeit not all of the news are good. It is tough to see a child suffer and I can only pray that Sophie outgrows some of her allergies some day.

Hang in tight. With your family's love and support, Sophie will grow to be healthy and happy and not miss anything at all. I send you prayers from across the globe. Blessings always!

Robin said...

Wow. My heart goes out to your family. We have people in our family who have celiac disease and that is NOTHING compared to what you are dealing with.
Thank you for helping us remember to be thankful for what we have.
You will be in our prayers and thoughts.
May God bless you with the strength to endure and the motivation to go forward.