When you find out something is wrong with your child you automatically get in to “go mode”– you’re ready to jump in head first and do whatever you need to do to “fix” it, and you want to do it RIGHT NOW! So this journey has been hard for me because it’s a lot of waiting, and honestly I’m the least patient person I know. After getting her diagnosis the GI told me to come back in 6 weeks to discuss it, in the mean time I’m to work with our allergist to determine possible food triggers. We did initial blood work that didn’t prove helpful and then she told me to come back in 3 weeks to do more skin testing. 6 WEEKS!!! 3 WEEKS!!! I might as well have been asked to hold my breath the entire time. I want to know NOW, but sadly that’s just not how any of this works. This has proven to be one of the biggest lessons in patience for me. You know what they say, “When you pray for patience God gives you plenty of opportunities to be PATIENT”. It’s been 4 weeks and in some ways it’s getting easier knowing that we are getting closer to finding out more, and in other ways waiting is getting harder because I have read every possible article and blog and watched every “Journey Story” on YouTube. I’m just dying to find out information specific to her diagnosis and treatment.
So to pass some time I would like to share with you the journey of discovering that AJ has Eosinophilic Esophagitis (EoE). The diagnosis itself is pretty new so we’re still learning bits and pieces, but I can share with you how it all began, how she was diagnosed, what has changed so far and what’s next.
Where it all began…
When Asher Jolie was born she was absolutely perfect it seemed. 10 fingers, 10 toes and big bright eyes.
She took to nursing immediately and was a breastfeeding champ. Presumably all was well. Eventually they came and took her down the hall to go to the nursery to get some things done and be looked over while I took a shower and got set up in my post partum room. Being my fourth child I wasn’t overly concerned about her being away from me in the nursery–after a few kids you learn to enjoy the time that other people are taking care of your baby and get all the rest that you can get. But soon one hour turned into a few and I needed to know when my baby was coming back to my room. A doctor that I hadn’t seen before came in and said that AJ hadn’t passed her meconium (baby’s first poop) yet and instead of stooling she was just vomiting and that she was being admitted into the NICU.
This was a HUGE blow to me for two reasons: 1.) MY BABY WAS GOING TO THE NICU and 2.) I had been on bed rest with all three of my prior pregnancies for threats of early labor and she was the first baby that didn’t really threaten to come early and SHE is the one who lands in the NICU…weird. AJ would spend her fist 6 days of life in the NICU.
They couldn’t find any obstructions or intestinal underdevelopment to explain her problems, she just kept throwing up and having difficulty feeding. It was chalked up as reflux and she was released as soon as she was gaining weight and able to hold down majority of her feeds. She nursed fine at home, but did seem to suffer from silent reflux issues; swallowing constantly, loud breathing, needing to be laid elevated, having milk constantly kind of running out of her mouth. When she was about a month old (maybe a little younger) I was taking her older brother to a doctor’s appointment and her breathing was so LOUD that the doctor stopped the appointment to check on her. She wasn’t in distress this was simply how AJ sounded. She informed me that AJ had Laryngomalacia (floppy airways) and that the reflux was making it worse. She was put on Zantac to help alleviate the symptoms.
We were getting fairly comfortable caring for AJ’s silent reflux although the symptoms didn’t seem an better we were happy that she didn’t seem to be in pain like most reflux babies we heard about so we counted our blessings. Eventually it was time to start introducing solid foods when she was around 1, up until this point she was eating baby food well. Although (at that time–she later outgrew it) she did have a milk and egg allergy (nothing that we weren’t already familiar with). That’s when this happened:
She loved food and she would try so hard to eat it. She would chew and chew and chew, but she just couldn’t swallow. This went on for months! I would take her to the doctor and they agreed that it was strange, but this was also during a time period where she had recurring strep throat, so it was being chalked up (and reasonably so) to it hurting to swallow due to strep. I was given a “GI Symptoms” log to fill out for 4 weeks.
So after months of trying Prevacid for her reflux and tracking symptoms, AJ was seen by a GI doctor who suggested that we have some tests done. She underwent a swallow study…NORMAL. She had a gastric emptying test done…NORMAL. But she still couldn’t swallow foods that weren’t the texture of her baby food. So her GI doctor decided to perform and endoscopy with biopsies.
Her first endoscopy came back showing reflux damage, but only a few eosinophils (there should be none, but it wasn’t an alarming amount and was within negative range). After this first endoscopy was performed we were told that it still seemed to be just reflux and to continue on with our current medication protocol.
A year passed and during that year AJ still had reflux symptoms but she wasn’t spitting out her food anymore. We were excited that she stop spitting we didn’t take that time to realize that the only reason she wasn’t spitting anymore was because she had STOPPED eating any solid foods at all. She was surviving solely on pureed foods.
At some point during that year she had a severe bout with asthma and was hospitalized and put on a daily Flovent inhaler (Flovent is a medication used to treat asthma, but is also used to treat EoE) it helped with her asthma and also seemed to help a little bit with her eating. She could now consume pureed foods, fruits, and some other odds and ends. But still not as much as she should be. At this point I realized that it’s not “normal” for a three year old to eat only baby food and went back to see the GI again. He also agreed that this was not normal for her age and wondered how bad her reflux was. So he decided to do a PH probe (see the measuring device in the picture below.) I was still skeptical of other issues going on and talked to our allergist about it. She suggested having him to another endoscopy with biopsies (since he was already going to be in there) and see what’s going on.
The results came back saying that the PH probe was negative for overwhelming amounts of acids, but her eosinophils were positive. He believe that we should move on with a diagnosis of EoE.
I remember hearing those words and going through a roller coaster of emotions. I remember being excited for a diagnosis and having my smile fade and going “that’s not the one I wanted… I specifically didn’t want THIS diagnosis”. He had told me prior that there was a fix if her acid levels were too high, but I had been made aware through people I know and research that EoE can be quite complex and quite brutal in some cases.
He prescribed her a swallowed Pulmicort (asthma medicine) slurry that she would use as a topical steroid for her esophagus–imagine if you could rub ointment on your esophagus. Then he suggested that I follow up with some allergy testing to determine what foods we may need to remove from her diet. Here’s the trouble with that, my kids are notorious for not showing much on tests even if they react violently to the actual food. But in general allergy skin and blood testing are typically not terribly accurate for EoE triggers, so it’s like trying to find a needle in a haystack. We are still on this portion of the journey, this is current. We have NOT yet determined what foods will be coming out of her diet–if any. We are still in the process of testing and hypothesizing. I am keeping a daily food log and symptom tracker.
AJ goes to lots of doctor’s appointments
And sometimes she doesn’t feel very well.
But we are extremely blessed because this disease can be HORRIFIC and right now AJ’s disease is very mild. We are praying that it stays this way. That HUGE dietary/lifestyle changes do not have to be made. That we can let her be as “normal” as possible. We pray for all of the families effected by EoE, many of which have children on tube feeds or elemental formula only with no foods.
Navigating dietary restrictions due to IgE food allergies is very familiar to me. I’ve been managing food allergies sense I was 4, but THIS is different and has me feeling quite anxious to know what the future holds. Thanks for coming along with me on this journey.