Monday, May 14, 2012

It's National Eosinophil Awareness Week!

Not a lot of people are aware of what eosinophilic disorders are and what they entail.  Here is a short fact sheet with some basic information about each type of eosinophilic disorder (remember, Caleb's sub-type would be under eosinophilic gastroenteritis).  Here is a short video with some information about eosinophilic disorders.  Watch it all.  Those kids will make you cry.  For more information, go to apfed.org.

I wanted to do this post to make you all aware of what Caleb goes through.  Yes, he looks "fine" to those who might pass us in the grocery store.  In many ways, he is "fine."  But for him to eat foods that he is allergic to feels like drinking bleach.  It's like pouring acid on a rash.  That's why he throws up and that's why he would rather starve to death than eat a single bite.  I remember putting breast milk down his NG feeding tube when he was a baby and had just come home from the NICU.  He would squirm, like he was uncomfortable, but he wouldn't cry.  I was causing him intense pain just by feeding him.  I remember when he was just over one year old and he would refuse to eat or drink for days, and then give in to the hunger and eat three jars of baby food, or a whole cup of yogurt.  Immediately afterwards, he would projectile vomit everything back up.

Here is what Caleb is able to eat today, his "safe" foods:

  • Apples
    • applesauce
    • dehydrated apples
    • freeze dried apples
    • apple juice
  • Grapes
    • raisins
    • grape juice
  • Peaches
    • pureed peaches
  • Pears
    • pureed pears
    • pear juice
  • Chicken
    • canned chicken
    • fresh chicken
    • ground chicken
  • Tuna
  • Sweet potatoes
    • pureed sweet potatoes
    • sweet potato fries
    • sweet potato chips
  • White potatoes
    • potato chips
  • Rice
    • rice pasta
    • rice milk
  • canola oil/safflower oil/sunflower oil
    • lots of added calories to his other foods!

He has been having an "off" week.  He won't take more than a few bites of any food at any meal.  He has been sleeping more than normal (goes to bed at 9/9:30 and wakes up at 10:30/10:45).  It's possible that he is reacting to one of the foods that we thought was "safe."  So we're stuck again.  We don't know what's going on or what to do next.

I just learned that another symptom of eosinophilic disorders is leg and joint pain.  I think Caleb is experiencing this.  He will stand at the top of the stairs and cry until I carry him down.  He will run from the driveway half of the way to the front door and then stop and ask to be carried.  He wouldn't take more than about ten steps at Disney World before asking to be carried.

I wish we knew why.  I wish we knew how to take the pain away (in his legs and his digestive system).  I wish we could tell if he was reacting to a food without having to put him under anesthesia and take a biopsy of his small bowel.

I wish he could have fruit snacks at nursery in Church.  Nate and I have decided that we can no longer let him stay in nursery during snack time, because he keeps asking for the foods that the other kids are eating.  Even if he was allowed to eat those foods, he probably wouldn't take more than a bite or two because he doesn't like eating, because eating is associated with pain.  But he still wants to be included.  He is able to identify many, many foods that he isn't allowed to eat (pizza, crackers, cookies, fruit snacks...).  As his parents, it is painful to watch.

I wish we could put him on steroids and allow him to eat anything and everything, but long-term use of steroids is dangerous.  When the time would come for us to take him off of steroids and do more food trials, he would have a hard time giving up the foods that were once allowed.  A month ago he "failed" a trial of green beans, and he still asks for them.  It makes me not want to trial any more foods, because it will just result in heartbreak when he "fails" and is no longer allowed to eat them.  But really, I just want him to be able to eat!  I feel trapped.  Like this will never get better.

I know you all love and care about Caleb and our family.  I can feel it in the support that we get and the kind words that you give.  Thank you so, so much.  It really makes a difference.

Now, I want to let you know a few ways that you can support Caleb and be more aware of what life is like for him and other people with eosinophilic disorders.  Here are a few simple things that you can do every day:
  • Don't eat in front of him unless he is in his high chair and has his own food to eat.  It will just make him curious and jealous if you do.  It's like smoking in front of someone who is trying to quit.  To put it simply, it's cruel and torturous.
  • Don't offer any kids any food without first asking a parent.
  • Pick up after yourself.  If Caleb finds food on the floor at church, he might put it in his mouth.  Not only would it void any food trials we may be doing at the time, but it might make him very sick with stomach pain and vomiting.
  • Teach your kids to be respectful, and be respectful yourself.  If you're curious about Caleb's feeding tube, just ask.  I really don't mind talking about it!  I'll even show you!  Teach your kids to be inclusive, and not to tease people just because they're different.  Caleb may never eat food at school.  He may have to give himself a tube feeding during lunch.  He may eat nothing but an apple and some chips.  There is no excuse for his peers to tease him.  This disease is painful and alienating enough.

Here are a few challenges that I want you to try:
  • Have a party or get together or something where food isn't involved.  Try it just once.  See how it goes.  Our society is so centered on food, but there are ways to have fun without food.  If you think this is too hard, think about how hard it is for Caleb and people like him to have to be around food at every party they ever go to and be expected to have fun without eating any of it.  Think about how hard it will be for Caleb to date some day.  There is only so much bowling and mini golf that a young adult can do.  Having this disease does not condemn him to a life without fun; you CAN have fun without food!  You just don't know it until you are forced to do it.  Take this as a reason.  I dare you.  ;)
  • Try to eat like Caleb.  Yes, that's right.  Limit yourself for at least a day to only the ten foods that Caleb is allowed to eat.  See how hard it is.  See how awful it is to watch everyone around you eating tempting things.  See how hard it can be to run errands without being able to depend on picking up some quick fast food.  We are going to the museum tomorrow and I can't count on stopping at McDonald's for a Happy Meal on our way home.  I have to pack his food, a lot of it on ice, and bring it with me.  It's doable.  We have been doing it for 11 months now!  You can do it for two days.  I believe in you!
  • Let me know how it goes!  I want to hear about how much fun your food-free party was, and how creative you had to get with Caleb's food restrictions.  Just FYI, you can use salt.  :)  And you can use chicken breasts cooked in canola oil, rice, apple slices, and applesauce to make stir fry.  It's actually quite good!  And rice milk, frozen peaches, and grapes make a delicious smoothies.  And you can use rice flour, salt, canola oil, rice milk, and applesauce to make pancakes.  :)
As an inspiration, think of those little kids on the video.  One little girl just wants a piece of birthday cake.  One little boy, not much older than Caleb, would give anything for a piece of pizza.  If thousands of people can do it every day, you can do it for a day or two!

Good luck!

4 comments:

Valerie Hill said...

Oh I feel your pain with your poor little Caleb. Its so sad to watch, and while the child adjusts as they get older, they never stop wanting to be included. I pray for you and your little boy, for new foods, and no pain. I pray for strength for you, to get through the hard days, and have the energy for the next. Lots of love!

Heather said...

The video was really good. I'm so glad Caleb can eat as many foods as he can, even though it's hardly much. You guys are awesome parents! Once I get a few things at the store, I am excited to try the Caleb diet.

Janet P. said...

I took the challenge... breakfast- potatoes fried in canola oil with salt, unsweetened applesauce, half an apple, and 100% grape juice. Lunch - raisins, tuna, rice and peaches canned in pear juice. Snack - grapes. Dinner - apple/sweet potato/chicken stir fry over rice.

It was fine for a day but can't imagine doing it every day. Love you Caleb!

Megan said...

So I tried it with one cheat. I didn't want to buy rice milk and I feel I need all the calcium while nursing so I did drink one glass of milk with breakfast but other than that used all safe foods. It opened my eyes. When I got hungry snacking to a satisfying full was hard. I also thought the food was a little bland and boring (chicken with no seasoning). You are amazingly creative in feeding him but I can not imagine eating only those foods over and over, day after day. He is a trooper and my respect for you grew! You really are an amazing mom. I want to try the no food party but need an excuse for a party first so I will have to do it someday.