Saturday, July 15, 2017

Food Allergy Mama

Over a bagel with peanut butter spread, I became a Food Allergy Mama in 2013.

For 3.5 years, we avoided any kind of significant reaction. This summer one bite of one granola bar changed that.

In late May and early June, Annabeth went to the Emergency Room twice due to allergic reactions to new foods. It was terrifying as a parent to make that drive to the ER and it was even scarier for our little girl.

This past week, we finally (we waited 7 weeks for this appointment) saw an allergist and went from just avoiding peanuts to results that show that she has life-threatening allergies to peanuts, almonds, Brazil nuts, cashews, coconuts, hazelnuts, pecans, pistachios, and walnuts.

Over the years, I have mastered the no-peanuts. I can rattle off a safe or not-safe list to just about anyone who asks. We know what restaurants to avoid. I can shop the grocery without even looking at the boxes anymore.

But the tree nut thing means starting all over. Over the years, avoiding peanuts, means we've generally avoided all nuts just because they are so often processed together. We only buy specialty cookies and pre-made snacks that are made in nut-free factories. But now we have to really look, really read. We have to recheck all of the restaurant websites. We have to educate ourselves about the alternative names for these nuts and where they might be found.

Being a Food Allergy Mama is exhausting. It's mentally taxing.

I feel like I am always on high alert:
Did you call the restaurant before we came?
Did you ask the waitress what those french fries were cooked in?
Did you make that birthday cake at home? Do you have a nut free kitchen?
Is that peanut butter on your kids shirt?!
No, not even a "little bit" is okay (My Momaw is always saying "I just put a little, tiny bit of peanut butter in it so Annabeth can still have it)

It's hard because she has to miss out:
That cake is from Kroger, it's not safe.
Oh, that princess event at Chic-Fil-A looks great but they cook in peanut oil.
The birthday party is at an ice cream bar? Is it nut free? No? Don't even show her the invite.
Everyone else is eating a granola bar and she can't.

I worry that people will think I am crazy for quizzing them before I allow Annabeth to eat at their house or their child's birthday party. I worry that people are insulted when I say that full list (but for the record, I never knew coconuts were a nut! I thought they were a fruit so I just want everyone to be clear on that too)

Most of all, it's scary. It's really, really scary.
Her second ER trip was following a morning at the Children's Museum. We went, we played, we had the same lunch we always have, and on the drive home her entire body swelled, covered with hives, and she asked to go to the hospital while gasping for breath. It was just a normal morning out, no new foods, no bakery, no nuts, and there we were in the ER.
I have been so afraid the rest of this summer. We went to summer camp and I took every single meal. We have played with friends and I have taken her lunch every time. I was an anxious mess trying to eat breakfast at a hotel worried about who had touched what before she did.
I don't want to be afraid or anxious and I certainly don't want to scare her but I also want to always be ready.

On the flip side, being a Food Allergy Mama has allowed me to help those who have come after us. I don't know how many people have messaged me with questions. I am by no means an expert but I always try to offer words of encouragement and support.

I am so incredibly thankful for everyone who has checked in this summer. Thank you for everyone who made Annabeth cards or took the time to call her to check in after she was in the hospital. Thank you to every person who says, "What kind of snack can I bring so Annabeth can enjoy it too?" and to every friend who makes a special dessert at their child's birthday party just for her. Thank you to every friend who sends me food labels before letting their child bring a snack into my home. Thank you to everyone who understands and respects that our home is nut free. All of those "little things" make this big task of keeping her safe so much easier!

If you are a Food Allergy sufferer or mama, I completely recommend Central Indiana Allergy. I am so thankful for their care and concern and for the treatment plan that they have developed to help Annabeth be as normal as possible while living with something completely abnormal.

If you are interested in more information I think this page is quite thorough and helpful.


Abbi said...

Wow, that is quite a job to be a Food allergy Mama. I can totally understand your drive to do it right however! When it is life threatening or even if it just meant a severe stomach ache or asthma symptoms or something like that - you don't want anybody to have to suffer like that, much less your child.

We are incredibly grateful not to have any food allergies (though we are wondering if Jonathan might be a little sensitive to Cow's milk as his congestion issues seem to be much better when we are drinking goats milk rather than cow's milk) but I have ended up being around a lot of people with allergies. Some are just minor but others are like Annabeth - it will send them to the E.R. if they slip up. It has been a fun challenge for me to try to make things that work for them when I can (for group events) and definitely if they are coming to my home.

I am sometimes amazed at how parents will not always prepare very well for their child with allergies. At baseball we have snacks afterwards and there is one child with severe wheat and dairy allergies which tend to be in the majority of snacks. I would think that I would always come with something for her so she doesn't have to go around asking about everything to see if they are okay for her and then go without anything if they are not. Also at our church Winter Retreat this year many came with food allergies and many of them did not plan for another option when the meals we had prepared didn't work for them. I guess I was surprised about that. We are trying to figure out a way to have some pretty safe items for our retreat this next year for those that have restrictions but still when the variety off allergies amongst people goes from Dairy, Gluten, chicken, peanuts, soy, tree nuts, etc. it is going to be challenging to make it work for everybody.

Amy and Mark said...

Wow! I cannot imagine not planning ahead! That would make it incredible difficult to plan meals for most any group!