Silent reflux was the label Aaron got. Our GI said babies usually outgrow reflux at 4-6 months old, while some babies take up to 9 or 12 months with a few babies having it for life. With that said, we tried to take Aaron off the Prevacid at 4 months, 6 months, 9 months and 13.5 months old. I postponed the 12 month wean due having another baby and not wanting that to interfere with his progress. Each time we weaned Aaron off the Prevacid, he would stop eating and cry like he was in pain again, so each time we placed him back on the Prevacid. It took about a month off the Prevacid for him relapse fully with his refusal to eat and only a week back on Prevacid for him to begin eating again. After the 13.5 month wean, Aaron started doing really poor and was actually not gaining weight at all. This due to the fact that you cannot sleep feed mac and cheese like you can a bottle. Don't worry, I didn't try! Aaron was 21lb at 12 months and 21lbs at 15 months. Also, he didn’t grow in height during those 3 months. My pediatrician became concerned that Aaron's height was now affected, so we went back on the Prevacid 15mg twice a day and he suggested adding Carnation Instant breakfast to his milk for extra calories. However, this time, his symptoms didn’t improve. Aaron would cry to sit at the dinner table to eat, but once he sat down, he’d only take a couple of bites. Also, he was falling asleep propped up in the corner of his crib, so we knew something wasn’t right. Our poor baby had figured out that sitting up in bed to sleep made him feel better. While our pediatrician was doing weight checks every few weeks, we went back to the GI and he decided that we should only offer Pediasure or Carnation Instant breakfast for him to drink and to remove all other beverages from his diet. Thankfully through his solid food stage, Aaron would always drink his milk and juice, so the GI wanted to take advantage of that. Also, the GI wanted our son to have an upper GI in December of 2010, but assured me the tests would be normal, which they were, so we were to follow-up in 2 months. The GI also said he wasn’t sure that he even had reflux, but taking the Prevacid wouldn't hurt him.
At Aaron's 17 month weight check at the pediatrician, he was still falling down the charts, so my pediatrician said to call the GI and tell him your son needs the endoscopy now. So I did and we had that scope January 2011 when he was 18 months old. His esophagus looked great, which was great news, but the GI sent off biopsies to check for other possible causes of his refusal to eat. The GI doctor said his results would come back normal, so I wasn't even worried about the tests. I was simply worried because I still didn't know what was going on with Aaron. A week or so later, I got a call from our GI saying that Aaron has something called Eosinophilic Esophagitis (EE). Try to say that 3 times really fast... wait, try to say it once! I was literally in shock and relief mode. For the last year and a half, I had been struggling to get this child to eat and gain weight normally and now he has some disease I have never heard of. What is EE? What does this mean? Why couldn't I have known this a year and a half ago? My baby has been in pain this whole time like I thought... Say what?! We immediately began a Pulmacort slurry treatment (.25mg Pulmacort respule + 4 Splenda packets swallowed for a topical effect twice a day). Trust me, as complicated as it sounds, it is just as annoying to mix up. Add onto that the kid has a refusal to eat... It has taken a while to get a routine where Aaron will take it not pinned down. Since being on this regiment, Aaron's eating has improved some. Meaning instead of staring at his chicken nugget, he eats half a chicken nugget, maybe a whole one if I get lucky. He might even take a couple of bites of something else if I can convince him. He does like corn, yogurt, cheese, fresh fruit and fruit snacks! Every now and then, he eats a decent meal. Like tonight I made grilled cheese and goldfish shaped chicken noodle soup. He ate about half of his crust-less sandwich and several bites of soup topped off with a fruit snack. Wahoo!!! I was overjoyed! I hope it isn't 2 more weeks until he eats a great meal again.
But is Aaron still in pain?! I have no idea… he’s 23 months, so he cannot tell me. I know some 2 year olds don’t eat much. My other 2 kids eat very well, so it's hard to tell. However, won’t any 2 year old eat cupcakes, ice cream and popsicles in abundance? Not mine… However, he does like his French Vanilla Carnation Instant Breakfast drinks. How can I tell if he's still in pain or is just too busy to eat? His symptoms seem consistent since 5 weeks old. The unfortunate thing about this disease is the only testing available is through biopsies collected by an endoscopy, which Aaron has to be put under for. The GI is giving a couple more months on the slurry treatment to see if he gets any better before re-scoping him. If he is better, what does that mean? That means he will stay on this medicine for life and perhaps one day get a better appetite. If he isn't better... the 6 food elemental diet. All I can say is that we believe in the power of God and that my little boy is healed and that the slurry is working. The Bible says to ask AND believe and it shall be given to you. So we are doing that.
So all this for the past almost 2 years has been this rare little disease called Eosinophilic Esophagitis (EE). For those of you who don’t know what that is, here is the best way I can explain it… you know how asthma is inflammation of the bronchial tubes? Well, EE is inflammation of the esophagus. In babies, it can cause vomiting, chronic cough, feeding refusal (ding, ding ding!), slow weight gain or may be a more significant failure to thrive. In children, it can cause pain with swallowing (odynophagia), difficulty swallowing (dysphagia) or abdominal and chest pain. This can be caused by food allergies or just because. We had Aaron allergy tested (prick and patch) in February to see if allergies were causing his EE. Other than cat, which we don't have, nothing showed up. In a allergy test prior to his EE diagnosis (he had a face swelling/hives incident) with a different allergist, dog and dust mites came up. We found new homes for our dogs. Aaron is under 4, so sometimes these tests aren't reliable at that age. I anticipate future allergy testing for him. If he is like his mother, all things airborne will cause him many sniffles, sneezes, wheezes and itches.
There are many kids with this disease that are allergic to one, many or all foods and therefore are on a feeding tube or a 6 food elemental diet (no milk, soy, wheat, eggs, nuts and fish). This is a fierce life altering disease for many. My prayers and thoughts go out to those families with the severe cases of this disease. For us, we hope to find a correct dose of medicine or any possible allergies in the future causing this. Soon, Aaron will be able to tell us what is wrong… but I sure don’t what him to grow up too quick! Aaron is a great joy in our lives and we love him so much! We are very blessed! I plan to journal the rest of this journey mainly for my sanity, but also to perhaps help anyone else going through this crazy whirlwind.
To God be the glory, forever!
For more information about this disease, visit this site. The more awareness this disease gets, the more funding and research will be done.
http://www.eosinophilicesophagitishome.org/
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| Here is a picture of Aaron asleep sitting up due to his reflux from EE. |
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| Here is a picture of our sweet Aaron swinging on the big boy swing. |
