New Treatment

I know that it is a little late but I promised to share what John and I decided to do for Austin’s treatment for EE. His dosage of steroids has been increased from 440 micrograms to 880 micrograms a day. He is getting calcium supplements for the osteopenia. His diet will still exclude milk, eggs, nuts, fish, soy and wheat.

In 3 months (November) we will travel back to Cincinnati for a one day trip for and endoscope. If everything looks okay we will introduce back Milk in to his diet. We will give him Milk for a set period time and repeat the process of going back to Cincinnati for another scope and introducing back another food.

As far as the osteopenia he will continue on calcium supplements for a year and then we will go to Cincinnati for another DXA scan to see if his bone density has improved.

A Place for Austin

There was a NEWS broadcast this morning on FOX about a boy with eosinophilic esophagitis. His mother created a blog to keep her family members abreast of Sy and his disease. (http://www.wflx.com/Global/story.asp?S=13067614) What a great idea! I have created a site for Austin and I will post new information about his treatments. I have also put a list of the foods Austin is not allowed to have on the left hand side of the page. If you forget, you can come back and review the list again.

The url for Austin’s site is sabosee.blogspot.com. Sabosee stands for Sabo’s eosinophilic esophagitis. Please bookmark this page so that you can reference back to it as I post new information.

Austin's Vacation - Email sent on 8/12/2010

So this week has been very informative. The Cincinnati Children’s Hospital does a really good job at making sure that the families that come here are taken care of. There are nurses, doctors, social workers, teachers, dieticians and a slew of other people waiting to talk to you about your son and your medical history.

Most of you know what Austin has but for those of you don’t or aren’t sure, he has a disease called eosinophilic esophagitis (EE). Eosinophils are a type of white blood cells. They are common in things like parasitic infections, allergy, connective tissue disease and tumors. They are not typically present in the esophagus. Well of course that is where my son happens to have them, in the spot that they aren’t typically found. These eosinophils will cause a hardening and constricting of the esophagitis.

Endoscopes are used to diagnosis EE. During the endoscopes they collect tissue and biopsy them to count the amount of eosinophils. Generally anything over or between a range of 15 to 25 eosinophils will constitute a diagnosis of EE. Austin has had 5 biopsies since he was originally diagnosed in 2008. They bounced between 10 to 40 to none eosinophils in his esophagitis.

We have used a plethora of things to try to reduce the amounts of eosinophils. Elimination of foods that he is allergic to, removal of foods that he isn’t allergic to but have proven to be effective in reducing EE, acid reducers and steroids.

On Monday we started our little ride here at the Cincinnati Children’s Hospital. We meet with a gastro doctor. He explained what would happen for the rest of the week. Austin had:

Upper GI to get the biopsies
DXA scan to look at bone density
Allergy testing (scratch and patch)

So far we have received the results of the DXA scan and the upper GI.

The biopsies didn’t come back with the numbers that we thought that we would see. His eosinophils were 229 in the middle of his esophagus and 104 in his lower esophagus (if you haven’t figured it out, those aren’t good numbers). His DXA scan showed that he was in the -2% for bone mass density for his age. The chart looks much like growth charts.

Eosinophilic esophagitis is a chronic disorder. He won’t grow out of it. It won’t spread. He has EE and that is all it is. It runs in families and it affects men 3 to 1. That is all I know and that is all I know about what has happened this week. We have spoken to doctors and they have given us some options for treatment. We need to talk to the allergist and the dietician tomorrow before we have a full enough picture to make a decision.

We will let everyone know when we know. In order for the treatment that we pick to be effective everyone will need to be aware and actively participating.

Austin's Allergies - Email sent on 1/11/2010

I know that it has been awhile since I have written a letter about Austin's health. I will try to catch you all up. In early December Austin went in for another endoscope. To recap where we were:

Austin went on steroids to get his eosinophilic (pronounced ee-OH-sin-oh-filic) esophagitis under control. After 2 months they preformed another endoscope and all looked REALLY good. The doctor decided took Austin off of the steroids to see if he could maintain. During these two months Beau and I did everything that we could to keep allergens away from him.

Unfortunately, at his last procedure his condition backslide. Austin is unable to maintain a healthy esophagus without the steroids. The doctor thinks that there are other allergies that Austin has to foods that have not been diagnosed, yet.

Austin will remain on steroids until.... TBD.

Ah, what will happen if Austin's eosinophilic esophagitis goes untreated?

What a great question. Nothing, for now. EE is a disease closely linked to allergies that involves an increased accumulation of white blood cells called eosinophils in the esophagus. These eosinophils grow in an uncontrolled manner and attack the gastrointestinal system, leading to vomiting, chest and abdominal pain, breathing problems, difficulty swallowing food.

I would like to again remind everyone about their part in Austin's health. Before we do, Beau and I want to convey that no one more than us understands the frustration of tailoring meals to Austin. It is very important to make sure that you are not feeding Austin any of the foods that he is allergic to.

Egg White
Egg Yolk
All Fish
Wheat
Milk – All milk (cow milk, goat milk, milk of the gods, ALL)
All Nuts
Soy

If you go to a restaurant with Austin have a piece of paper with his allergens written on it. Ask for a manager and share them with him. French Fries are almost always not allowed and the toughest because he loves them. The oils are generally vegetable, soy or peanut. FYI soy is a vegetable and often added to vegetable oil and not always properly marked. So the best practice is no vegetable oil. Fries are never fresh and are often fried and then frozen and shipped. What they fry them in at the factory may be peanut oil while in house is canola.

Things that you thought were okay for Austin may not be anymore. I used a butter that Austin can eat called Olivio. It is made with Canola and Olive oil. It didn't have dairy or soy. As of late it now has "sweet cream" and soon it will have soy lecithin. I have found a replacement butter called Earth Balance soy free. Not until after I reread the ingredients for Olivio.


Rice dreams is another that caught me by surprise. I was certain that this was my new best friend in building memories with Austin. NOT ALL RICE DREAMS ARE AUSTIN SAFE. If you get rice Dreams for Austin you must read the ingredients.

For example they have soy in them
· Rice Cream Cocoa Marble Fudge Frozen Dessert
· Neapolitan Frozen Dessert
· Orange Vanilla Swirl Frozen Dessert
· Cookies n Dream Frozen Dessert

I was on the website looking at ingredients and gave up trying to find one that didn’t have soy lecithin in it.

We were recently introduced to All Natural SO Delicious products. Austin enjoys their coconut milk and yogurt products. They have the following flavors of yogurts Blueberry, Passionate Mango, Plain, Raspberry, Strawberry Banana & Vanilla. I personally like coconut milk much more then the rice milk products.

Austin's Allergies - Email sent on 10/16/2009

Austin had an endoscopy this morning. The good news is that everything looks good. The bad news is that this is the beginning of a very expensive and time consuming experiment/process. I want to thank everyone that has been patience with Austin’s allergies over the past year. We know that it is difficult to have this burden cast on you when spending time with Austin. I know that I sound like a freaked out overly cautious mother sometimes and I am sorry but if a little dairy, soy, egg or any other food allergy makes it in to his diet the results could have long term heartbreaking effect. My fear is cancer of the esophagus.

I have attached some pictures of what the endoscope took pictures of and what the results look like. On the left are pictures from 6 weeks ago. On the right are pictures from today. It isn’t easy to see the inflammation in these scans but trust me they are there.

Austin took an inhaled steroid twice a day for 6 weeks to get his esophagus back to normal. Dr. Hernandez didn’t even take a biopsy today because everything looked so good. Since everything looks so good we are taking him off the steroid for 6 weeks. During these six weeks it is imperative that Austin not be exposed to any of his food allergies. Which are:

Egg White

Egg Yolk

All Fish

Wheat

Milk – All milk (cow milk, goat milk, milk of the gods, ALL)

All Nuts

Soy

He will then have another endoscope to see if he can maintain without consistent steroid usage. If so then based upon a skin test and a blood test, the least offensive allergen will be introduced for 6 weeks followed by another endoscope.

I know that it is nice to share a meal with Austin out on the town or a quick fun snack from the store but you can’t. If you go to a restaurant with Austin have a piece of paper with his allergens written on it. Ask for a manager and share them with him. French Fries are almost always not allowed and the toughest because he loves them. The oils are generally vegetable, soy or peanut. FYI soy is a vegetable and often added to vegetable oil and not always properly marked. So the best practice is no vegetable oil. Fries are never fresh and are often fried and then frozen and shipped. What they fry them in at the factory may be peanut oil while in house is canola. Also just a little of any of his allergens will take us backwards. I know it is fun to be the good guy but if it says that there is dairy in it, no matter how little, he can’t have it because it will jeopardize all the time effort and money we have invested in to this new treatment plan.

I hope that everyone understands and I will keep everyone apprised of his treatments and results.