On EE: A Post For Oprah!

I've wrote before about my son's Eosinophilic Disorder. Specific posts are Living With Eosinophilic Esophagitis and severe food allergies , Eosinophilic Esophagitis and Foods To Eat, and The Ice Cream Truck Crisis.

I don't talk about my son's illness every day. I try not to sound ungrateful and wallow in self-pity when others have it so much worse than us. But as our son's health has declined recently even with treatment, I've found myself more vocal and advocating more. I want everyone to hear his story. His story as well as other EOS kids stories deserve to be heard.

Take one minute and imagine your life without food or even limited foods? Can you?

Our son can't go out to eat. He doesn't get to enjoy the ice cream truck, Halloween candy, or birthday parties like other children do. When most kids are asking, "What's for dinner?" our son is asking, "Will I puke it?" He was diagnosed with an Eosinophilic disorder at the age of 2 and now at the age of 5 1/2 he's not growing well. He's lower than the 5 percentile on height and weight. He looks more like a 3 year old than someone going on 6. Despite the puking and pain, he's an energetic, clever, and artistic little boy. There's just something special about EOS kids...

Recently Greyson's doctor discussed the possibility of a feeding tube. We are now at a place that I never thought we would be. With that, My fear has been turned into action. We can no longer stay silent about this illness. We need a cure for our children.

Today a facebook group of EOS parents are sending Oprah ( and other shows) over 100 emails to raise awareness for this heartbreaking illness. While I'm not an avid Oprah watcher, I'm taking part by writing this blog post in hopes that someone will recognize just how devastating this illness is on our children and the whole family. I hope you will join me by sharing this on your facebook page, tweeting about it, writing Oprah, or even writing a blog post of your own. If you have any questions I'm always available via email, facebook, or Twitter.

For more information on Eosinophilic Disorders you can check out APFED, CURED, and CCED.

How can Oprah resist this beautiful face?

The Boy And His Music

Our 5 yr old son has always had a "thing" for music. Many a nights he has fallen asleep listening to music while sitting in his Daddy's lap. For a while that was the only way to get him to sleep especially during those times when he would throw up for days on end (due to his EE).

When we are in the car he wants the music on and he wants it loud despite my incessant warnings that he will go deaf at an early age. And, his taste in music certainly isn't Barney, the Wiggles, or those Kidzbop Cds. We've tried putting "that" kind of music on for him to listen to and he literally freaks out. He'd rather listen to Black Label Society, Maroon 5, and the like. It's always been this way with him... even when he was baby.

Now he's progressed on to making up song lyrics. Yesterday evening he shared with me his latest very short song...

"Oh No! Oh No! I don't want to be little" to the tune of something very hard rock-ish.

While it's cute, I think he will be eating those words when he gets older. Something tells me that when he becomes an adult he will be wishing he was a child again...unless he actually does become a rockstar. In that case, I guess he will be living the dream life.

The Ice Cream Truck Crisis

I used to like the ice cream truck. Now, not so much.

Our boys were first introduced to the Ice Cream Truck just last year when we moved back home to where my husband and I grew up. At first I thought it was fun for them but now that Baby Picasso, our 4 yr old son, has been put on a more restricted diet due to his EE I am constantly trying to avert a crisis when the Ice Cream music starts to play. FYI, If you don't know what EE is you can read more here, Living With Eosinophilic Esophagitis )

Yesterday, our boys were playing a baseball game and here comes the ice cream truck. Literally every kid ran off the field with a gleam in their eye - my kids included. But I had to tell mine "no" while most of the other children devoured their yummy treat. I even had to tell my 8 year old he couldn't have ice cream because his brother wasn't able to eat it. I felt like the most horrible Mom.

So, I've had enough of the ice cream truck. I want it to be banned from baseball games unless it carries corn-syrup free icees or organic ricecream - which will NEVER happen. I want it to forever stop coming by our home. I want the truck engine to blow up beyond repair. I want the music box to break because the sound instantly breaks my heart. And honestly - I Hope The Ice Cream Truck Gets The Freakin' Swine Flu.

I'm just so tired of all this heartache...and it's making me bitter.

Eosinophilic Esophagitis and Foods To Eat

Up until about 2 weeks ago, we thought we had our son's food allergies and eosinophilic esophagitis under control. Then the vomiting started again, and now it's bad. He's vomiting almost everything he eats unless it's rice milk, rice cereal, bagels, peanut butter, eggs, or crackers. How is my baby boy supposed to live like this? It's hard on him and it's hard on us. I had to take away his trick-or-treat candy today. Truthfully, we should have never allowed him to have any of it in the first place. But we gave in and allowed him to have things he shouldn't because his steroids were helping him, or at least masking his problem. His GI Dr. also said we could try and re-introduce some foods if he wasn't having any symptoms. I guess we gave him too much.

We made an appointment next week with his specialist to see what we need to do, and this morning we started him on a very restricted diet once again. An elemental diet such as Elecare is something we are also considering at this point as well. I guess we will wait and see what his GI Dr. suggests.

So, in the meantime, I've been searching for new recipes our son can eat for what seems like hours and I'm not getting anywhere. What can I make that tastes good and is soy-free, dairy-free, meat-free, and corn-free among other foods? Really, what's left?

The Terrible, Horrible, No Good, Very Bad Day

Here are the ingredients you need to have a terrible, horrible, no good, very bad day:

1.) Have 3 yr. old wake up up with a 105 F temperature
2.) Give tylenol
3.) Have 3 yr. old wake 2 hours later with a temp back up to 105.4 F
4.) Call pediatrician after dropping 6 yr. old off at school.
5.) Pediatrician is out for the week
6.) We are told to go to the ER
7.) Go to ER
8.) Get to ER crowded with people wanting pain medicine. Is your wrist hurting really an emergency? I don't think so. Grrrrr.....
9.) 3 yr. old gets put into a room near several patients infested with lice. OMG. Freakin out.
10.) People wanting drugs on the other side. Total nightmare.
11.) 3 yr. old has ear infection. Yes, we already suspected that. We just need antibiotics.
12.) Get home, give medicine.
13.) 3 yr. old pukes medicine. He is allergic to it.
14.) Call ER for new medicine. They don't seem to comprehend our son's allergies & condition. This does not surprise me!
15.) Call pharmacy. No new medicine to pick up.
16.) Pharmacy ready to close, call ER again about new medicine.
17.) Finally get new medicine a few minutes before pharmacy closes.
18.)Takes meds, all is well until temp spikes back up!
19.)Temp down, goes to sleep
20. The terrible, horrible, no good, very bad day is OVER.

Thankfully the antibiotics have kicked in and our son is doing better today.

Living With Eosinophilic Esophagitis

Our 3 year old son has a rare non-curable food allergy disorder called Eosinophilic Esophagitis in which his immune system attacks the food he eats thereby attacking his body internally. I've wrote about his disorder very briefly before. However, I've never went into full details about how his disorder affects him and our daily lives mainly because I don't want it to seem a bigger issue than it is.

But today, unlike most days, I feel the need to spill my guts.

It breaks my heart daily to see my son go through this but he is a tough little guy. Yes, I'm aware that things could be worse but knowing that doesn't make it any easier. Having a child with EE is not easy. He does not have a normal life. Among other things, he can't eat at most restaurants, he will never have a school cafeteria lunch, and he can't indulge in most birthday party cakes & goodies for fear of getting sick. Our son knows there are many many foods he can't eat and that food list will possibly grow as he gets older.

Most of your kids will probably ask, "What's for dinner?" while our 3 year old son will say, "Will I puke it?".

He is so accustomed to throwing up (he did it several times per day for over a year before his complete diagnosis) that most of the time, unless it comes on suddenly, he will go to the bathroom-puke, flush, repeat, puke flush, repeat. It is again heartbreaking to say the least. Now with the help of a restricted diet and steroids this only happens once or twice a week. Sometimes we will get lucky and he will go for 3 weeks straight without any gastrointestinal sickness.

When trick or treat comes along he won't be eating much candy like most of the kids. I will go through his bag just giving him a few things to sample while his 6 year old brother devours more than his fair share.

Our biggest challenge right now is food restrictions and modifications. I want to change the way our entire family eats just for him. It is something that will take some time. However, I know total restrictions are impossible. For instance, our 3 year old is severely allergic to our 6 year old's favorite foods.

We are very thankful for our son and his health. But today I want people to be made aware of this disease and it's effect on families. Click here to view a video to help you understand more about these disorders. In the near future I'm hoping to organize a fundraiser on this site to support EE and APFED.

If you have a child with a life altering disorder, any of the EE disorders, or food allergies I'd like to hear from you.