No food for you...

Well, we got news this week...good AND bad.  Caleb has a moderate to severe case of eosiniphilic esophagitis.  I will now refer to his disorder as EoE.  However, his doctor told us that he not only has the esinophils in his esophagus (hence the term EE), he has them throughout his whole digestive tract and stomach.  For blogging purposes, I will call it EoE. In all actuality, he has what is called Eosiniphilic Gastro Intestinal Disease.  His esophagus, stomach and colon all had substantial amounts of these esinophils.  This is what causes Caleb to have severe joint pain, acid reflux burning, sore throat, stomach ache and intestinal cramping.  Needless to say, he has not been a very healthy boy for the last five years.  The doctor recommended what is called the 6-food elimination diet.  There were three options for a first course treatment.  The first was a chemo-type immune suppressant, the second was a feeding tube with elemental formula and the third was the 6-food elimination diet (SFED).  We were given the opportunity to try either of them, but decided that the SFED was our best option.  Since Caleb will (hopefully) attending public school this fall, I didn't want him on any drugs that would suppress his immune system since he already has issues with getting sick and getting the worst of it.  We didn't think the formula and feeding tube was a good option either (seems somewhat invasive, don't you think?)  Although, after living with Caleb on this diet, the feeding tube might have been a better way to go.  There are not many good options for food.  The ingredients are ungodly expensive.  Caleb's grandmother has been nice enough to make several trips to Whole Foods, Trader Joe's, Biggs and Kroger to buy foods he can eat.  There are about 10 things he can eat and these 10 items taste like cardboard (for the most part).  Anyway, here is what I was able to find online about the SFED.  This was copied from http://www.afped.com/  this website has been a wonderful resource for us.  We still have so much to learn.  For now, it is cardboard and hockey pucks for Caleb.  And, we are getting him a job because the cardboard and hockey pucks are not cheap.  A loaf of brittle-book bread costs about 6.00 and tastes like...well...a book...

Eosinophilic Esophagitis (EoE) is a condition that is gaining more and more recognition. Unfortunately though, the treatment options for EoE are not black and white.  EoE may be treated either with medication, which has known long term side effects, or nutrition therapy, which has been shown extremely effective, but may be hard to follow for some.
Medication treatment for EoE is the use of steroids. However, this is not a long term fix. As EoE is a chronic condition, treatment with nutrition therapy is often discussed. Here are nutritional therapy options for EoE:

• Elemental Diet – A diet consisting of solely an amino acid-based (or elemental) products
• Elimination Diets – The removal of allergens from the diet. 
  1. Tailored Elimination – Elimination of specific allergens based on allergy testing
  2. Six Food Elimination – Elimination of 6 top allergens based on the most common allergens seen in EoE patients

The Six Food Elimination Diet 

The 6 Food Elimination diet is interesting because it bypasses the need of extensive food allergen testing.  As you may know, allergy testing (skin prick tests and blood tests) are not perfect. There are often false positives which can make the treatment plan more complicated and time consuming.  So what the 6 Food Elimination diet proposes is that, off-the-bat, patients will eliminate the top 6 allergens seen in EoE patients. The top allergens are milk, soy, eggs, wheat, peanuts/tree nuts, and seafood. One study¹ confirms there is a 74% success rate when using this type of nutrition therapy for EoE. (As a point of reference, an Elemental Diet shows a 95-98% success rate based on multiple studies)

Advantages and Disadvantages to consider 

The advantages of using this nutrition therapy are that the EoE patients may still eat solid foods. It also eliminates the need for extensive skin and blood tests to check for food allergies. Important disadvantages to this diet therapy are that it may unnecessarily remove foods from the diet. This could increase the risk of the patients’ nutritional status. As some of you may know, it is hard just to remove milk and soy from your diet. Try eliminating 6 different allergens while maintaining your nutritional status!  One way to ensure there are no risks for nutritional deficiencies is to supplement the diet with a nutritionally dense, hypoallergenic elemental product, such as Neocate®. This will help ensure the patient is getting all the protein and nutrients they need per day while guaranteeing that no allergic reactions will occur upon starting the elemental products. It is vital that EoE patients are monitored by a dietitian. The dietitian will help calculate how much of the elemental product the patient will need per day and also make sure the nutritional status of the patient is maintained.

Off to the doc

Well, we are off to see the specialist this morning.  We are getting ready to see what the next step of our journey will be.  I am nervous, anxious, excited, fearful, hopeful and scared.  Will update later.  Hoping and praying for no chemo and no feeding tube...

What is EE?

OK...although our journey doesn't begin here, the information starts now.  As I begin to write about Caleb's condition, I will forewarn you.  I will probably be writing a bit sporadically and hopefully it will still be easily understood.  It is a bit overwhelming, the information we have recieved thus far.  According to Wikipedia, EE, (Eosiniphilic Esophagitis). is a complicated digestive system disorder in which eosinophils, a type of white blood cell, are found in above-normal amounts in one or more specific places in the digestive system and/or the blood.
When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.
These rare diseases are diagnosed according to where the elevated levels of eosinophils are found.
Caleb's body is attacking itself and EE is sometimes considered to be an autoimmune disorder.
Common symptoms may include pain, swelling, skin rash, hives, reflux, choking, difficulty swallowing, nausea, vomitting, loss of appetite, stools containing blood and/or mucus, abdominal cramping, diarrhea, fever, esophageal rings, motility problems, bowel obstruction, bowel or stomach wall thickening (from scar tissue buildup), pseudopolyps, protein loss, anemia, malabsorption, developmental delay, bleeding, and several other symptoms that occur in individual cases. Many people also experience nutritional deficiencies and/or side effects from medications, such as neuropathy (nerve damage) or osteoporosis (decrease in bone mass).
Special amino acid-based formula may be needed as a supplement for those whose diets are so limited that they are unable to obtain enough nutrition from food alone. Some primary forms may require the avoidance of all regular foods and complete reliance on an amino acid-based formula, which may be consumed normally or pumped through a special feeding tube. For the most severe flare-ups or for those who experience problems from all foods and formulas, feeding through a blood vessel may be the only remaining option. Some cases also require additional symptom-specific help, such as pain medication. This disease may cause such severe bleeding or nutritional deficiency that they condition may be life threatening if not treated with appropriate medications. Since there is no known cure for Eosinophilic Esophagitis, management of the condition is very important in order to prevent severe damage to the digestive system and to the organs caused by the high numbers of eosinophils.
  I hope and pray that Caleb's condition improves.  I am  little fearful since he has seemed to go downhill recently.  He went from not being able to tolerate foods well, to having severe joint pain, abdominal bloating and pain, hives, other skin lesions and rashes, slurry speech, rectal prolapse and just an overall feeling of lethargy and jusy "not feeling right."  That is all for today.  I will be doing more research and writing as I learn more about Caleb's condition.