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.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

12 thoughts on “The Long Road to Eating

  1. My boys have severe allergies to food with many restrictions. They are also super sensitive to every day things around the house. We should meet and I can go over what we do for the boys. It’s too much to type. It would really help. I will PM my number to you. Tanya

  2. Hi Tatum,
    Just want to say I’m thinking of you often and wishing you the strength and endurance it takes to care for Owen. I’m so sad about the eating issues. Don’t know if you have heard of a Dr. Kevin Wand (Bloomington). He is an outstanding holistic Dr. and extremely knowledgeable regarding allergies, etc. I wanted to mention his name to you just in case you wanted a referral to someone with an excellent reputation.

    Hopefully, we can plan a summer meeting now that we are finally getting some decent weather. I have every window open. Yeah!
    Love,
    Mary

    • Hi Mary, Yes, Let’s definitely get together. I also need lunch with Patricia, so maybe the three of us could meet one day?

  3. Hi! My son has food allergies- the bananas specifically. One thing about this specific allergy is that it is tied to a latex allergy, which a lot of babies that are hospitalized for long periods of time develop. Look up the American Latex Allergy Association. It gives a lot of information on this and a list of cross reactive foods. We have had to go super, super slow on introducing new foods and started with the one ingredient approach also. Even now it seems that some stuff he has already tried in the past causes a reaction later and I cannot figure out the link. We see the allergist for the first time on Monday. My son breaks out in an eczema type rash when he does have a reaction and we also battled this same rash when he was in the NICU. Because of this, I make the majority of his babyfood. It is really easy and kind of fun once you get the hang of it. I live in a rural area so finding a variety of foods can be problematic, so I often use frozen fruits and veggies. I hope this helps some, please contact me if you have any questions.

    • I never knew the banana latex connection. We’ve not known him to have a latex issue, but I’ll definitely watch for it. That’s interesting.

  4. Tatum, I am truly sorry for this struggle that little Owen is going through with food. I have not personally gone through any major food issues such as this, thus far with my boys. I do, however have a friend at work who went through quite an ordeal with her son. He was eventually diagnosed with EE. If you would like her email to discuss with her specific things to ask/do I would be more than happy to give it to you! Please email me and I can give you the info and a little more background.
    We have to work together to get/give support whenever we can 🙂

  5. Aw, sweets. We’re in a weird place with the whole allergy thing as it’s not Tucker’s biggest challenge, so we have to fight to just get more allergy tests. So far, they’ve done a few of the awful scratch tests and he gets horrible rashes on his face and hands when he’s exposed to new things…and we don’t know much. We know tree nuts and peanuts and dander and pollen, but don’t have a clue about so many other foods. I think our pediatrician only wants to give us so many referrals at once and right now (Tucker will be 4 in July), it’s for a neurological psychologist….I’ve also noticed that when he’s sick or getting sick that he gets these horrible terrible rashes on his face. I am convinced they’re allergies but nobody wants to believe me because his diet doesn’t change (I’m like TEST HIM FOR infant IBP) but yah.

    Anyway, enough about us, I’m so so so so sorry to hear that you’re struggling with this. I don’t know if it’s true but we were told by an allergist early that a lot of things won’t test positive until histamine levels are high enough to trigger a reaction which means that they might have to be exposed to it more than once (hello, thank you God for epi-pens).

    Personally, I also vote for allergist. I just feel like they’re looking for things that GI and DP and the rest are not…and please keep us posted. You guys are in my thoughts!! Huge.

    • Thanks, Kristi! I appreciate the support. I also hope that you can get your allergy questions figured out. It seems many medical professionals forget that food impacts every system in our body….but I also understand the idea of focusing on the top priorities. It’s honestly why I’ve been hesitant to add an allergist back in, we already have 7 specialists, a ped, and all the therapies…so I get both sides of that argument. Either way, I hope we can all get to a place where I kids can eat comfortably and safely and until then, I’m glad we all have each other to rely on.

  6. Does Owen have a dietitian? I may be biased because I am a nicu/short bowel syndrome dietitian, but there is so much to talk about and a good dietitian could be so helpful!

    • Hi E. He technically has two dietitians, I’m not sure I’d call either of them good. Do you have referrals in the Minneapolis/St Paul? I really am hoping to get him to a place where we can make his formula instead of using a powder.

  7. I have several friends with kids who have severe food allergies. They recommend a web site called Kids with Food Allergies as being the go to for these thing. HTH and big hugs!

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