Callum's Diagnosis

This week we found out something new about Callum:  He has been diagnosed with Eosinophilic Esophagitis (EoE, EE) and Eosinophilic Gastritis (EG).

To me and Beena, it represents two different realities.  I've taken the approach that knowing is better than not knowing, but to her, it reaffirms the reality of a life of limitations for Callum.  Thus we differ in our reactions to this diagnosis.  However, in my opinion, a diagnosis does not change who he is or nor does it change our day-to-day realities... it is the same as it was yesterday.

But to know your enemy is to have power over it.  We can now walk a path where we know the reasons and can take an informed direction in dealing with this.

First of all, it is important to understand EoE:  EoE is a disorder in which eosinophils, a type of white blood cell involved in allergic reactions, infiltrate the walls of the esophagus. This eosinophil infiltration leads to inflammation of the esophagus and can cause a change in the cellular structure of the esophagus, and will cause scarring if left untreated.  There is currently no medication for curing EoE, but there are some steroidal treatments for alleviating some of the damage and or symptoms.

Related to this is EG, where the same condition extends to the stomach as well.  Unfortunately, the steroidal treatments do not work in the stomach, so no way to alleviate the symptoms or damage.

So Callum's doctor presented three very different treatment options:

• Off-label use of Flovent, by swallowing the mist -- this would be continued indefinitely, and would help the EE, but not the EG.   This option allows the inflammation to be controlled by reactive treatment, with no proactive effort to control the root cause.
  
• Remove the top 8 allergens and selective elimination of food -- this is a better approach, whereby the most common causes are eliminated, and any other potential allergens are removed as well.  This would be determined by testing him for different foods that he eats, using a skin test to make sure there is no IgE reaction.  Unfortunately, Callum is allergic to all of the top eight, as well as many commonly 'safe' substances as well.  So this option would be slow, and limited in scope.
  
• The last and best option is to eliminate all food, and feed him with Neocate Jr. (Neocate Junior with Prebiotics is a nutritionally complete, powdered amino acid-based medical food for children over the age of one for the dietary management of cow milk allergy, multiple food protein intolerance (MFPI) and food-allergy-associated conditions: gastroesophageal reflux disease (GERD), eosinophilic esophagitis (EoE), short bowel syndrome (SBS), malabsorption and other GI disorders)  Then we would introduce food items one by one, and try to watch for potential reactions.  For the most part, we do not expect any visible reaction.  Once we've added 3-4 food items, then he will undergo another endoscopy, and if all is well, we will move forward with another 3-4 items, and repeat.  If on the other hand, there is a reaction, we would go backwards and try to figure out what is causing the reaction.

We have chosen option 3, which was also favorable in the doctor's opinion.   Unfortunately, with Callum, this is not an easy road.  He is exhibiting EoE/EG without any of the top eight allergens in his diet.  Further complicating matters is the fact that the bulk of food that Callum eats today is just "lower" on his sensitivity scale, nothing is "not allergic".

So, over the next few weeks, we will be doing more testing to understand what options we have in terms of a food elimination diet.  Hopefully Callum does not end up being a kid who is being tube-fed Neocate for the rest of his life.

We have a long, hard, road ahead.  I do not think it will be easy.  I am not sure how we will convince Callum to have nothing but formula... maybe a MacBook Pro and a mechanic's chest of tools.