The Long Road to Eating

Six weeks ago, I shared our, work in progress, journey with Owen getting to a comfortable place with food.  There has been another visit to GI and some new developments that I’m still trying to process, so here’s the short update and I’d love to meet other families who have been down similar path with food restrictions.

Where I Left Off:  As a reminder, after our first visit with GI, we decided to try Owen on an elemental formula that is hypoallergenic.  We stopped all other feedings in order to give a good test to see if the new formula helped clear up Owen’s extreme eczema, discomfort with stooling and retching after feedings improved.

Another Diagnosis?:  What I didn’t tell you last time is that Owen’s doctor had a diagnosis beyond “just” food allergies on the back of his mind when he first saw Owen.  He wonders if Owen may have Eosinophilic Esophagitus (EE or EoE, depending on who you talk to).  This is a disease that causes inflammation and scarring of the esophagus when exposed to allergens – typically food, but they can also be environmental.  If the allergens are avoided, the esophagus can eventually recover.  People with EE are typically male, have severe eczema, often have asthma and known food allergies. (check, check, check & check, if you’re keeping score).  EE allergens will not always show up in blood testing, they are two different allergic reactions.  Some people with EE have only one trigger allergen…others have nearly nothing that is safe for them to eat.  It’s a really broad spectrum.  The only way to get a definitive diagnosis is take biopsies of several areas of the esophagus via an endoscopic procedure.

How is he doing on Elecare Jr?:  Knowing that this disease was a possibility, I didn’t freak out when Owen wasn’t magically better.  I was only encouraged to see improvement.  His skin still is bad behind his knees, on his hands and on his lower back.  However, we reached a point where I didn’t have to give him Benedryl so he wouldn’t wake up crying and bloody from itching in his sleep.  I was able to get him back to near baseline feeding rates without inducing retching and he no longer had constipation.  However, he is still sometimes uncomfortable with stooling that is now very watery and he has started retching with stooling.

The Next Steps:  

  • After negotiation (I didn’t like the first idea to try him back on Pediasure for a month), we decided to give Owen three more months on Elecare Jr, the hypoallergenic formula.
  • Now that Owen is over two, GI expanded his blood allergy testing to the 15 most common foods.  He was tested for the 5 most common foods last spring.  We knew that Owen had allergies to Wheat, Egg and Peanut.  We now must add Barley, Peas and Soy Protein to his list of foods to avoid.
  • Because Owen is asking for foods, I pushed really hard to allow him to try foods again.  GI agreed we could start giving him foods, however, he must pass a two week test with each new food introduced.  Because there is a potential that Owen has EE, it’s not just breathing issues that we have to worry about.  EE would present itself with eczema and swallowing difficulties.  So, we start with one, one-ingredient, food and watch for skin or swallowing changes.  If he passes over a two week period, than we can add one more ingredient and we continue, until we’ve identified which foods are safe for Owen.
  • We will reassess in three months to see if we should move forward with the endoscopic procedure, but we don’t want to put Owen through it, if this cautious approach solves the problem.
  • We will reinstate Owen’s feeding sessions with OT and will focus on drinking and exploring any foods that we find that are safe.

How is the food trialing going?:  We are so far zero for one.  Owen failed bananas.  On his first trial, he started scratching his hands bloody within 5 minutes of being exposed to the food – he hadn’t even really tasted it.  We tried again the next day when he did taste it a little more.  Again, his hands started getting scratched and he became red around his mouth.  I did look up least allergic foods and bananas is on the list, however, I’ve seen a couple of sources that stated that bananas that have been treated with a ripening agent can cause issues.  We will probably go back to bananas in the future but using only organic to see if that makes a difference. Actually, all of our food trials going forward will be organic and home-made.  I want to give Owen his best shot.

Mom Worries:  I will admit, the banana fail along with the new list of blood tested allergies has me feeling really discouraged.  I know that kids with asthma or BPD often get false positives from blood testing for allergies, however, I have seen Owen show skin reactions to several foods now.  While I won’t say that he has EE without a diagnosis, I do believe that Owen’s reactions to food are real.    I don’t want to come off as dramatic or overly worrisome, but a restricted diet greatly decreases Owen’s chances of coming off the g-tube.  There are worse things than g-tubes, but I still hope he one day doesn’t need it.

Help me, please!  So, here’s where I need the help.  Who else has dealt with EE or a slow food trials like we are facing with Owen?  How did you approach food trials?  With which foods, when did you re-test?  Did you use organic, homemade, or it didn’t matter?  What am I not even thinking of asking?  Were there any alternative medicine therapies that worked?  Do you go to both GI and an allergist?  We broke up with our last allergist and I’m trying to figure out what more an allergist can add to the discussion.

I’m all ears, and really appreciate suggestions.