Wednesday, May 18, 2011

Differences and similarities for kids with EE. National Eosinophil Awareness Week

Thanks for stopping in again. There is really a lot to say about EE and I don’t want to go on for ever and ever. But I do want to help with awareness for this one week out of the year. This is my last post about it this year. Thanks for sticking with me for three days;)

Here is a video for National Eosinophil Awareness Week
There are a lot of heartbreaking videos about kids with Eosinophilic disorders on the internet. They make you cry. I can’t watch those because I live it. I can share this with you because it is just informative;)

My son is able to do all the things your kids can do, except when it comes to food.
When he had his ng-tube (nose tube) he could do anything but swim. He is pretty fearless. Here he was at 3, climbing a wall with a tube up his nose. Seriously, that boy is unstoppable!
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As soon as his belly healed when he got his g-tube, he started swimming lessons. He does wear a shirt when he swims just as one layer over his button.
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He has dreams just like other kids. Last year he wanted to be a cop when he grew up. This year he wanted to be a Karate Master. (That’s what we all want to be when we grow up, right?)
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He tries everything and does it with everything he has!
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He has fun parties like other kids. He laughs and cries too. Mostly he is a very silly kid!
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He plays ball. He runs and jumps and plays.
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There are some things that are different.
He gets sick more easily. Like I mentioned yesterday, he still does get sick and we don’t always know why. He throws up at the drop of a dime if he is sick. We aren’t always ready for it, unfortunately.


This one kills me. It kills him too. It is very hard to go to restaurants or people’s houses where food is going to be served. Two years ago, he didn’t have as many “safe foods” as he does now. In this picture we were with Rebecca’s kids, our Grandmother and some other family at a restaurant on vacation. My son wanted to eat real food with us. Unfortunately, all he could have was cotton candy at that time. He wants to eat the same thing other people are eating. Oh this is heart breaking! Imagine sports games where they pass out snacks after the game. Nope, he probably can’t have the snack. He usually can have the drink though. We do take our own replacement whatever it is to each thing. But it isn’t always easy to not be doing the same thing as everyone else. 20090527_016

For Easter he really wanted his own chocolate candy. We have found one kind of chocolate that he can have that he likes. I made some peanut butter candy for him. I can’t go to the store an pick up any random candy for him.
 

When each new school year starts, I have already met with the staff and gone over what he can and can’t have. It is so hard to let him go and trust that someone else will make sure he is not eating food that will make him sick. I send him with a sticker for the first few days that says something about not feeding him anything I didn’t send in. It is hard to not be with him all the time and know he is going to be ok. Next year he will go to Kindergarten and I’m a bit nervous about how it all will go. I am not worried or sad about him going to Kindergarten. I am worried that his teacher or other adults in charge of him, won’t understand the severity of him accidentally eating a food he is allergic to. 20090909_012

I can’t think of a holiday or celebration that doesn’t involve food. I start to dread each holiday or celebration because of the whole food thing. I always try really hard to have a replacement thing for events and celebrations. For example, for Halloween we do the game where you eat a hanging donut. (See Rebecca and I posing for our donuts? I do think her mouth is bigger than mine is. She does talk more than I do at least;)
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We hung an apple for my son instead of the donut. We have to get creative about his alternative choices for everything.
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For school celebrations of birthdays we have to get creative. One year we sent in bananas that we decorated with stickers for his snack to share with the kids. 20100216_502

He has had birthday cakes for the last two years. I just make them specially for him.20100227_985

He still Trick or Treats for Halloween. We come home and sort out the candy into piles of candy he can have and candy he can’t have. We give him a nickel for each piece of candy he can’t have. We donate the candy to Operation Gratitude where they send your candy to the troops. You can tell that it is bitter sweet for him. He knows he will get something out of the candy. But he really just wants to eat it like other kids do.
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We still do activities with food he just can’t eat it.20101212_999_32

This one kills me. This year at preschool they had us bring in a dozen filled eggs. They hid all the eggs and the kids each got to collect a dozen. The part that kills me is that our eggs were accidentally used the day before his class. I had no idea that happened or I would have brought more in. He was so crushed that he didn’t get any eggs with candy he could eat. There was one person that brought in Play doh filled eggs and he did get two of those. But he was really crushed! 20110421_999_23

Something that I wish people knew about kids with food allergies is that it is hard for the kids. They want to be like the other kids. I can’t always make the exact thing other kids are having, but I can make a replacement that my son would be ok with. I believe it is my responsibility to provide alternatives for my kid. But what I would really like, is for people to tell me they are going to have this snack or that food. If I don’t know you are taking cupcakes or cookies to school for a birthday, I can’t provide a replacement. I am more than happy to bring anything in, I just need to know about it.

Thanks for following along with me these last couple of days. I hope you have learned a little bit about Eosiniphilic Esophagitis. There are different kinds of Eosinophilic disorders. Whatever part of your GI tract the Eosinophils are present in, is the second part of the disorder. Since our Eosinophils are present in our Esophagus, ours is called Eosinophilic Esophagitis. There are all kinds of life paths that kids with Eosinophilic disorders/diseases take. Some kids will never have more than a handful of foods they can eat. Some kids never have even that and are on elemental formula only. Sometimes you can suddenly become allergic to a food that you have eaten forever, and you have to take it out of your diet. Some families need medication to help them manage this thing. It is like any other challenge where they don't really know much about it. Even the name changes. Sometimes you will see the word "Disease" and other times you will see "Disorder". Sometimes the initials for Eosinophilic Esophagitis are EE and sometimes they are EoE. There needs to be more breakthroughs for this thing whatever it is.
APFED and CURED are two places that are working on figuring this thing out. Check them out and donate if you feel so inclined.

This was a very basic run down of what it is like for us. But hopefully it is enough to make you think a little bit. I wish there was a cure and my son could eat like other people do. I wish we didn't have to have 3 Epi-pens in the house. I wish I didn't have a cabinet full of medical supplies. I wish I didn't have a monthly battle on the phone with the insurance to cover his needs.  I wish driving for hours to specialists and doctor’s appointments and biopsies and endoscopies weren’t a part of our regular lives. I wish we didn’t have scrutinize every ingredient in every food we eat. I wish I didn’t have the knowledge of hidden foods in places you would never suspect. (Did you know powdered sugar is made with cornstarch almost all the time? Did you know there is maltodextrin/aka corn in chicken at Boston Market? Did you know that there is barley in enriched flour?) I wish that I didn’t need to know about a week set aside for Eosinophilic disorders.  But I do know all these things. This is part of my life. Of all the challenges in life that we could be handed, I am thankful this is ours. That is what life is...challenges and how you navigate through them, right? Rebecca posted this saying on her Pinterest "Be Kind: for everyone you meet is fighting a hard battle." So true.  My husband and I have two amazing little boys. We are very thankful to have them. It was a tough road to get them and we are amazed by them every day. That doesn't mean that sometimes I am not very graceful navigating this. I stomp my feet and yell at the holiday and wonder why food has to be part of our lives. I do. At the end of the day, I accept that this is just a part of our lives. It isn't what defines my son. It isn't what defines me. It is just part of how we live. I realize that many other battles other people are fighting are much harder than ours.

 I hope that by sharing with you, maybe you will maybe have a better understanding about what it is like for some people to navigate through this food filled world. Hopefully you learned a thing or two about our challenge. That is what this week is about...awareness.

Thanks for indulging me;)

Take care!
Anjeanette

11 comments:

Jennifer said...

It makes me sad that parents don't let you know in advance about birthday snacks and the like. When I was a kid, I had a sensitive stomach and reflux and couldn't have pizza (or spicy foods), chocolate, or soda. At least half the time, if a child was bringing in chocolate cupcakes or cookies, their parents knew about me and would send something special for me, like a peanut butter cookie, or one lone vanilla cupcake. It breaks my heart to think parents today are not as thoughtful, especially for a kid who misses out WAY more than I ever did. Your son is strong, brave, and amazing and I hope he will grow to feel that way about himself. I promise that if any of my kids ever go to school with a child with EE, I will always be considerate of that.

Juliane said...

As a teacher, I have had children with allergies in my class virtually every year (some mild, others quite severe). I have always asked the parents of children with allergies to send in something that I can have on hand in case someone surprises me and sends something in for a birthday and didn't let me know. For one child who had severe allergies, the kids went home with a list of "safe foods" and were asked to send in treats that were on the list for birthdays or holidays. That same child also had cupcakes in the school freezer for the birthdays and holidays. I feel badly for the children who can't have what everyone else has but if they have a special treat, it seems to soften the blow.

Tara said...

Wow. Thank you so much for sharing your family's struggle. I am amazed at your and your son's strength. I will also watch for ways to be more considerate of those who have food allergies. To be completely honest, I never even thought about it when sending snacks and treats to my kids classes. I will definitely check with their teachers now to be sure there aren't any allergy issues I need to be aware of. Thank you so much for bringing more awareness to EE.

Sue said...

Thank you so much for sharing. Knowledge is a good thing, and I appreciate learnig about EE. God bless you, your little champ, and the rest of your family. Take Care.

Heart's Cry said...

I have a friend whose daughter has EE and this is a blessing

Heart's Cry said...

Thank you for sharing your experiences. I have a beautiful little friend who has EE.
Heather

Stephanie Lynn @Under the Table and Dreaming said...

Hi Anjenette, Just wanted to say thanks for writing such a wonderful post. You have an adorable little guy! My son actually has EE too along with several severe food allergies {plus a little bit of everything else it seems =)} I feel your pain as I read through each little thing you listed. My son is now four and on formula and it is so hard. He is still non verbal and autistic so he doesn't quite understand everything. They are so resilient and strong though like you said. Thanks again though for posting and spreading awareness.. It's greatly appreciated and your little guy is lucky to have a wonderful mom! Blessings ~ Stephanie Lynn

Donna Huisinga said...

My son was diagnosed with juvenile diabetes at two so I know the heartache you are going through. I had to worry about food, insulin reactions, and substitute whenever necessary. He is now 36 abd doing fine. Yours will too. It is so hard as a mother, I know.

Centers and Circle Time said...

He's an awesome little boy! Thanks for sharing!

Anthony and Erin Mills said...

That is so sad. I can just imagine the trouble he goes through. I know what it's like not to have a healthy child. My son has juvenile arthritis. When we decided we wanted to have a baby I never dreamed that I would have to deal with this sort of thing. I just pray and pray that everything will be ok

Dareth said...

I love Rebecca's quote. It's so very true. Each one has a story. Thank you for sharing yours.
Love you!