Tuesday, March 4, 2014

Game Plan

Harper had her allergy testing yesterday to see if we could identify anything that might be triggering her asthma. Poor baby girl was NOT happy when the nurses were pricking her. She had a tougher time than her brother did.


She's allergic to grass, trees, and mold. Those should be easy to avoid, right? ha! The doctor doesn't feel like these are huge contributors to her asthma, though, and should be easily controlled by the Singulair that was recently added to her regimen. Her biggest triggers so far have been viral (usually has asthma episodes right before she comes down with a cold) and inhaled smoke or fumes. Over the last 2 weeks it's improved (only had to use her rescue inhaler 3 times) with her upped dosage of Qvar steroids so hopefully that will get it better under control.

It's not routine to test asthma patients for food allergies but since she is at a higher risk for nut allergies since she has a sibling with them, she got tested for those as well. Not the news I was hoping for...she is also allergic to 2 kinds tree nuts. Less than Harrison, thankfully, but she's at higher risk for a severe reaction because of her asthma.

Before Thursday I really didn't have a lot of knowledge about food allergies. I have a 9 year old cousin who is severely allergic to peanuts (can't even touch them or his skin breaks out in hives) and I know it's been a hard journey for my aunt and uncle. But other than him, I've always been sort of quick to shrug off the trend of food allergies and intolerances. You hear all this buzz around words like gluten and I've never really bought into all of it. I guess just because I never had a reason to? But after reading about nut allergies and hearing personal stories from several moms in my community I definitely understand now that it's imperative to take them seriously.

It would be one thing if ingestion just caused a rash or hives or an upset stomach, but nut allergies can be life-threatening really fast. They are the 2nd leading cause of childhood death. And they are sneaky. Just because you have a mild reaction the first time or two does not mean it will stay that way. Increased exposure can actually make them worse. The way I understand it is their bodies have a limit, and once they've reached that maximum limit that's when they start to go into shock. Even from just traces through cross contamination of the nut they're allergic to.

This has all been really overwhelming. There are a lot of implications that will affect our daily life, but the hardest part is battling the fear and anxiety. I feel a lot of pressure to protect my babies and obviously there will be many occasions in which I'm not in control. Entrusting their safety to others is going to be my biggest challenge to find peace in. Yesterday was my Cry Day. It started pretty much the moment I left the doctor's office and continued on and off all day. But I got it all out of my system and I feel much better today. Rick and I sorted through everything and came up with a strategy on how we're going to best manage everything...and this Type A girl copes a lot better with a game plan.

*Obviously, avoid tree nuts. Even the nuts they aren't allergic to, because there is a high risk of cross-contamination and also a risk of developing allergies to them since they're closely related. To be more specific, tree nuts include: walnuts, pecans, almonds, hazelnuts, cashews, pistachios, pine nuts, and Brazil nuts.

*This means reading every food label. We also have to look for the warnings that say "manufactured in a facility that processes tree nuts" or "may contain traces of tree nuts." It's usually right under the ingredients list. Which, by the way, are on TONS of food products that you would never suspect with this warning label. A few examples: canned frosting and cookie sprinkles, 95% of the loaves of bread at our grocery store, ice cream, etc.

*I will be providing their own snacks at school to make it easier for the teachers to avoid giving them something they can't have.

*No more food bought from bakeries or any cakes, cookies, brownies, etc. that aren't homemade by myself or someone I know is aware of their allergies. This will be challenging at birthday parties and holidays but I told the kids that if they ever have to pass up a treat they really want, we can make our own goodies at home to make up for it. My goal isn't for them to miss out on fun or feel left out, but it's my job to protect them. I talked to a mom over the weekend whose child took one bite of a cookie that they didn't know had cashews in it and they were calling an ambulance 5 minutes later. It's not worth the risk.

*The kids will each have their own Epi Pen carrying case to leave with them at church/school/YMCA/etc. We remind the teachers and caregivers each time we drop them off and make sure they know how to administer the medicine and what signs to look for.

*We ordered them each an allergy bracelet to wear to serve as a reminder during snack or lunch time.

*We are training them to ask before accepting any food whether or not it could have nuts in it. If the person says that they aren't sure, we are teaching them to say they can't have it. It's already helped, too. Someone offered them a free sample at the grocery store and Harrison asked if it had nuts, and sure enough, it did.

*When we go out to eat we will make sure to let the server and/or manager know that they have nut allergies. We will have avoid greek and asian restaurants as well as ice cream parlors (boooo) due to the high use of nuts and therefore high cross-contact risk.

My main purpose in writing this post is to educate family and friends who are around the kids on a regular basis. Rick and I both feel that the more we teach our loved ones about nut allergies, the safer our babies will be. I'm also going to provide a few links that have been helpful to us. Please take a few minutes to read and get informed.


http://www.foodallergy.org/allergens/tree-nut-allergy

http://www.foodallergy.org/anaphylaxis

http://www.epipen.com/how-to-use-epipen

http://kidshealth.schn.health.nsw.gov.au/fact-sheets/tree-nut-allergy

http://itchylittleworld.com/2013/02/05/its-just-not-worth-the-risk-our-anaphylactic-experience/



We did consider the validity of the test results and whether or not we should get a second opinion. This is going to be a huge adjustment for us and we want to be sure they are truly at risk before shifting our lives around and worrying all the time. False positives are possible. But considering 4 out of 5 of the 60 substances Harrison tested positive for were nuts, it's pretty safe to say the pattern speaks for itself. The allergist we saw was highly recommended and I got a good feeling from him. I don't see that getting a second opinion would help us because it would be the same exact test. It's too risky to do an oral food challenge now since they are so young, but when they are 8 or 9 that will be an option. (food challenges are where they are given tiny amounts of the food to ingest and they are closely monitored in a hospital in case they have a reaction). So for now we are going to play it safe and be cautious. And of course pray that they don't ever get in a situation where they need their Epi Pen.

I'm sure I don't need to say this but I feel like I should put it out there. And please hear me when I say I don't mean this disrespectfully. But if anybody rolls their eyes at us, gives us negative feedback, brushes this off, isn't supportive of our cautiousness, and doesn't take this as seriously as we do, we will not be leaving our children in their care. It is our primary responsibility to protect our kids and we have carefully researched and considered the risks and how we want to manage all of it. We can't in good conscience entrust them to anybody we feel isn't 100% on board with diligently protecting them through avoidance. Put yourself in our shoes; I'm sure anybody with kids can understand where we're coming from.

1 comment:

Tienna said...

I love that you wrote this!! From someone that is just starting her parenting journey, it's very helpful (though scary) to be made aware of not only your personal situation, but to be reminded that the care of our children has to ALWAYS come first, even if that care could be incredibly inconvenient. Prayers for your babies. I'm sad that they'll miss out on some tasty treats, but based on how unhealthy our society has become, maybe it's a blessing in disguise. :)

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