Rare, pshaw. Hardly!

Rare, pshaw. Hardly!

According to Apfed, Eosinophilic Esophagitis, a RARE DISEASE, affects 1 in 2,000 people. So, in the city of Ann Arbor, MI, where there are approximately 121,000 people living, we can hypothesize that there could be 60 people, who have eoe, walking through that college town of only 28.7 square miles.

That is the most math I have done in quite a while, please don’t expect that of me again.

 

So what is my point with all of this?

My dudes (yes, I talk like this in real life and yupper, I am nearly 40), we’re not alone. None of us are. Last week, I received a message through one of my social media platforms. It made my day, that someone came to me with questions. This young lady was freshly diagnosed and, rightly so, was distressed. It was a relief to her to find our story and to find someone else with this link. Hank may be rare, but he isn’t the only one in the neighborhood! So, how do we go about finding others in our same boat?

Social Media: Through Instagram, you can find other families like mine. Families that document their daily lives and struggles, triumphs and wins. Head over to Facebook and not only can you also find us, you can join support boards that cover the world, your state or possibly your county, province or city. And if you can’t, you can start your own! Connect with these families, engage in conversation, ask questions. I have found that most people will answer your questions and lend support. So, ask away!

APFED.com: I love this group, here, you can find local, volunteer-led support groups. This page will also connect you with their online support group.

Your doctor: Who better to know of your local resources than the men and women who are helping you navigate this situation? Ask there for suggestions as well. The bonus here, is that they may be able to recommend a therapist for better one on one support.

I, personally, respond to all (appropriate) questions that are sent to me and usually have the time to dedicate for a conversation. I am not an expert and I don’t sugar coat our experiences. But I am also available for an extra shoulder.

 

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Yum! I hate it!

Yum! I hate it!

Food trialing is an interesting endeavor. Not only are you trying out new foods and companies for allergens or cross contamination, but you are also trying to gather more food for the family menu. We’re one of those crazy families what will not make separate meals for everyone at the table. We will, of course, leave off a component if there is an issue; Dave hates pickles – no problem, Hank has issues with tomato sauce – not an issue, Hubs refuses beans – leave them off. But we sit down to the same meal.

The hardest part of trialing, I feel, is when there is a new food that Hank can eat and likes. We buy it, he loves it and we make it apart of the menu, whether it is a snack or a meal. Since I hate to waste money, I will buy when I find items on sale, or when I can fill an Amazon Pantry box. But that also means that I may buy more than just one to make sure that we have it in our “stock”. You see where this is going, yes? You know what is going to come next? When, and only when, I have more than one box in my stock, that is when he decides that he doesn’t like it. Thus, causing me to eat it myself, or store it to try again or donate.

Right now, I have 4 boxes of carob granola bites, 6 bags of everything free Hank-safe stuffing mix, 4 carob suckers, two bags of “new” beef jerky and three boxes of cereals that he liked and rejected. He really likes to stick with what he knows and loves. We re-introduce these foods a few weeks later, but maybe 80% of the time, dude rejects them again.

Last week, I took the remaining box of muffin mix from Enjoy Foods, we started with 6, and tried them again. The first time, I had used a donuts shaped tin and coated them with cinnamon and sugar. He loved them. The one time, that is. I had made them again and he refused. I have added carob chips, blueberries, brown sugar crumble and he has hated them all. For this batch, I added two bananas, a cup of mini carob chips and three tablespoons of SunButter. HE ATE THE WHOLE BATCH. So, as I am a creature of habit, I already have another 5 boxes in my Amazon Pantry box, ready to do this all over again.

The best advice that I have, if you are going through the same thing, is to not get frustrated (SNORT). Eating for him is hard and he only eats so much in a day, so, slow and steady progress. We go on binges every month or so, when we go to the grocery and scour the aisles for food that is Hank-safe and then present it, very scientifically, for him to try.

We sit down as a family and watch food programs, not to frustrate anyone, but to learn what other people are eating. I assure everyone that we can figure out how to make the meal taste close to the original, as long as everyone understands that I am not a professional chef. Bizarre Foods is a family favorite, even if it does sometime turn my stomach. Sorry, Andrew Zimmern, but at times, you are cray –even if Hank thinks you are amazing.

Once I have pressed “Save” on this, I am going to start this week’s grocery list and I think that I am stuck this week. Throwing back to the menu planning post, what are you having for dinner this week? Because if I’m not careful, we’re going to have a meal of bugs and blood stew…

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Crouching Allergens, Hidden Tree Nuts

Crouching Allergens, Hidden Tree Nuts

I am bad at remembering things – all things. I have to look and relook at name tags, ingredients list, instruction manuals. In fact, when Crouching Tiger, Hidden Dragon was released in theaters, it was renamed Crouching Tiger, Hidden Treefrog by me; THAT I could remember. Because I can’t remember anything, I have to make sure that I research multiple times, everything, that comes into my home, because hidden allergens are everywhere. EVERYWHERE. Wheat in PlayDoh, sesame in lotions, orange oil in soaps, soy in tea, barley in “natural flavoring” … the list goes on and on. The hubs and I have to read every ingredient list for every consumable product that comes into our house. Grocery shopping for new foods takes forever and we still have to double check products after we buy them, just to make sure that we aren’t unwittingly grabbing something that we thought that we properly cleared. To be completely upfront with the fact that I am not an expert, nor a robot, I have on many occasions posted to my local mom group with bags of free food that I realized too late were processed on shared lines.

When Hank started Kindergarten, I worked with his teacher to come up with an alternative to Playdoh. After a messy mess and another sticky gross maker, we did find this recipe from Parents.com that worked well. Held its color, shape and didn’t leave a horrid mess on the work station.

We have taught our children to look at the soap in public bathrooms. Typically, if the soap bottle has a picture of an orange on it, I have found that they use orange in the product. However, since strawberries are more expensive, manufactures tend to use an artificial scent. I have read on my support boards that several families carry a plastic baggie with safe soap in it. Not even a hotel will be safe; we stayed at a hotel this past summer where the shampoo and lotions had sesame oil in them. We didn’t use them, but I side eyed everything in the room that could have come into contact with it.

I drink a lot of decaf chai tea and have a particular brand that I am very fond of. However, after Hank asked for a sip (AND I GAVE IT TO HIM) I realized that I never checked, but I figured that it would be safe. This is never the case; it won’t be safe just because you think that it will. Always check before giving anything to your allergy child. I found that Bigelow tea uses soy lecithin in some of their teas to help disperse tea through the cup.

Even at the dentist, you need to always be your child’s mama and papa bear. We couldn’t get a clear ingredient list on the polishes and fluoride used in the dentist office. For his safety, Hank gets plain ol’ flavorless pumice for his cleanings. The best part of him never having the bubble gum flavoring? He doesn’t even know that they exist! We have a great family dentist. So great, in fact that they met with the manufacture representative for their fluoride supplier. They, on their own, walked though all the ingredients and rejected their standard order as it contained an ingredient that could trigger a reaction to those allergic to nuts! They switched to make their office safer. Near tears that made me. You can read more about the connection here.

If you have bought a product in the past that was safe, it is always recommended that you reread the ingredients before buying it again. Companies can and do change out ingredients. And unless you enjoy giving foods away like I apparently do, check new foods from trusted companies. That elbow noodle may not share a line or a facility, but their lasagna noodle may…

To read more about common hidden allergens, take a look at this article on The Journal of Allergy and Clinical Immunology.

 

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