The Beginning of a New Journey (long post!!)

Wow! I can’t believe that it’s been over a year since my last blog entry. I’m not going to make up any excuses, although I could! Life with 4 kids gives you plenty of excuses, but really I just lost the joy in it for a while. I felt like sometimes this blog had no real purpose, that it was just one more in the thousands of mommy blogs that fill up the internet. Recently I’ve had several people ask me if I was ever going to resurrect it, that they missed reading up on what we were doing. Missed seeing my menu plans and recipes! lol Then, we became an ADHD family with Jonah’s diagnosis in October of this past year. We also think we may be dealing with Autism but we are still waiting to rule that out. Then in May we became part of an even more exclusive club and I realized I’m going to need an outlet for my thoughts. Seeings as it is 5:33 in the morning, I’ve been up for an hour with racing thoughts and sleep seems ever elusive, I thought I’d try to get them out on paper so to speak. This entry is mainly about Brianna, but to understand how we got here you need some of my story as well.

When I was in my late teens food and I started to have real issues. I didn’t have an eating disorder, although to the kids at my high school or someone who passed me on the streets you might have thought I did. The truth was that I loved food! I’ve always been a bit of a foodie. I could watch Food Network for hours. I read cookbooks for fun! Especially if they have really good food photography! I love world cuisines and trying foods I’ve never had before. My problem wasn’t so much that I didn’t like food, but food didn’t like me. I couldn’t eat. Food would get stuck. I wasn’t actually choking, although that was the only way I could describe to someone else what was happening. I could talk to you, I could breath, although that was painful. Food just kind of sat there in my throat and wouldn’t go anywhere, until I would throw up, either voluntarily or involuntarily. My mom started taking me to doctors. They would look at me and order an Esophogram. No matter how many of those I took, no matter how much barium I drank, no matter how thick, I always passed. They would write me off as another teenager with an eating disorder and send me off. But I knew I had a problem, and so did my mom.

We were lucky to have a friend who worked for a local gastroenterologist. By this time I was “choking” on everything that I tried to eat. I was drinking 3-4 high calorie Ensures a day in order to keep my calorie intake high enough to not be passing out. She asked the doctor she worked with to meet with me. I could tell he wasn’t convinced at the end of our first appointment but he decided to go ahead and do an endoscopy, more to humor me I think than because he actually believed me. So at 18 years old and weighing in at a whopping 88 pounds, I underwent my first endoscopy. The results were like nothing any of us expected! My esophagus, the lower 3rd just above my stomach, was narrowed to the size of a pencil eraser! Just to give you some idea, it’s supposed to be the size of a half dollar! Why this never showed up on any esophogram, and I had had many, we’ll never know! But my doctor said I was lucky I hadn’t choked to death on water! He had never seen a stricture this bad on a teenager. Only the elderly have strictures like that. It took 3 endoscopies with dilation to get me opened back up, but even then the largest they could ever get me was the size of a quarter. So, I began my journey through the world of esophageal disorders and gastroesophageal reflux disease (GERD).

Flash forward 15 years, we now have Brianna who is a healthy, happy 10 year old. She inherited her moms love of food and all things eating! Then, one day we noticed that was sneaking off to the bathroom a lot during meal times. I started watching her like a hawk and had Steven and my mom do the same. One day I got up and followed her when she left the table. I opened the bathroom door and found her standing by the toilet. I asked her what was wrong and she said she needed to puke. I asked if her stomach hurt and she said no, that she felt like something was stuck in her throat and she couldn’t get it to go anywhere. My heart dropped! All I could think was “Not again! Not my little girl!” That whole ordeal had been so hard! Knowing that people thought you were crazy when you knew you had a problem was maddening. But I had been a teenager. Would I find someone to listen to me about a 10 year old?? We continued to watch her a little while until we had enough incidents to see a pattern and I called her pediatrician asking for a referral to a pediatric GI at Children’s.

First meeting with her GI he walked in the door and upon getting her history of asthma, eczema and horrific seasonal allergies (the big 3!) asked if we had ever heard of EoE or Eosinophilic Esophagitis. In fact, I had, only because I’m a nerd that reads too much and I ran across it while I was researching possibilities of what could be going on with her. EoE is a very rare disease (there’s some debate but it’s believed to affect between 1 out of every 3,000-4,000 children) that is caused primarily by a delayed food allergy reaction. In individuals with EoE the body reacts to foods, but unlike children who have an anaphylactic reaction which you can immediately see and can be fatal, EoE reactions happen often days after eating an offensive food. And the reaction is often only seen internally, in the lining of the esophagus. (Some children with EoE can have anaphylactic reactions to foods as well, but not all do.) The esophagus lining becomes very thick, very inflammed. It isn’t a stricture like mine that requires dilation. It just makes it really hard for food to move through without feeling like it gets stuck or takes longer than it should. Sometimes though food will get stuck and they will have to go in and physically remove it.

The first step to diagnosis was to put Bri on an acid blocker to rule out GERD. We did that for 6 weeks and saw no improvement in symptoms. During this time she also had an esophagram. She passed it with flying colors, but I told her GI not to put too much trust in the results, I always passed mine too! The radiologist who conducted the esophagram asked if I knew what they were looking for and I told her they suspected it was EoE. She said “Oh! Well, then I would expect her to pass an esophagram with no problems! EE kids don’t have trouble with liquids, only solids. I’ll put in her chart if the suspicion is EoE to go ahead with an endoscopy for diagnosis and not to put too much faith in the results of this test.” And I knew then we wouldn’t just be brushed off and passed around. At that moment I was so grateful to live where we live because Cincinnati Children’s has been at the forefront of researching and developing treatment for this disease for years. They knew what to look for. They knew that this is real. And I knew we were going to get answers!

After the time frame was up for the PPI (acid blocker medicine) we went back to the GI. He was not surprised at all that we hadn’t seen a change in symptoms and we scheduled an endoscopy to get an internal look. Unfortunately, at this time the endoscopy is the only way to diagnosis EoE. It’s invasive and requires anesthesia but it’s relatively quick and having had many myself by this point I knew what to expect and felt very comfortable with the procedure. The day of her appointment Steven had to be in meeting with the vice president and couldn’t get out of it, so it was just me and the girl! She did amazing! I never saw tears, except when her time kept getting pushed back and she was so hungry she couldn’t stand it! But she was a real trooper and I promised her ice cream on the way home for being so strong! I know she was nervous! She had never had anasthesia before but the way Children’s does it is great! I got to walk back to the procedure room with her, they gave her gas to put her under (she got to choose the “flavor”, she went with grape!) and then they inserted the IV after she was under! No tears, no fighting! It was great! And I got to stay with her til she was asleep and give her a kiss before I left her. The staff is just amazing and I knew she was in great hands as I walked back out to the waiting room.

I wasn’t in the waiting room 20 minutes when they called for me and said she was finished and her GI was ready to speak to me. He said she had done really well and everything had been great. He said that he was 98% sure now that we were dealing with EoE. Then he showed me the pictures! If body organs and such make you queasy you may want to brush over this part, but showing people what her esophagus looks like has been the best way I know of to get people to understand what she is dealing with!

This is what a normal esophagus looks like!


These are called furrows. These are not normal in a healthy esophagus.


This is what her esophagus looks like just above the furrows.


You can see how very thick and inflamed the lining is in this section of her esophagus. This is why she is having problems swallowing. Food has no problems going through the top part of her esophagus. Everything there is normal and in working order. But once it hits this area it starts to hit trouble. And the body realizes that it’s having to work harder than normal to get the food down. That’s when the “choking” feelings start. And it all clicked in my head. The times she has said things like “Mom, I can’t eat that it doesn’t go down well!” and I think “What is she talking about it doesn’t go down well? That doesn’t make sense to me. She’s not having any obvious distress eating that food!” but there you go! It’s clear why certain foods “don’t go down well”!

So, where do we go from here? Well, that’s a great question with more questions on top of it unfortunately! This is a chronic autoimmune (although the autoimmune part is being debated now too!) disease. There is no cure at this time. There aren’t even any drugs that are approved for the treatment of this disease. There are several methods that are used regularly. The first is diet elimination and allergy testing. Figure out what foods are triggers, avoid those foods, heal the lining of the esophagus therefore achieving a “remission” of sorts. You can try to add back in foods over time but if symptoms reoccur those foods are still an issue and must be removed again. It’s a vicious cycle but it works in about 78% of patients. The percentage it doesn’t work with usually are the kids that are allergic to EVERYTHING!! There are kids with this disease that are allergic to upwards of 20 different foods! And the allergies are so far ranging that they end up on feeding tubes because they can’t get enough nutrition from eating the things that are allowed. We are praying, of course, that that will not be our outcome. But it looks to be more of an issue with EoE kids than I ever dreamed before we started along this path. We are scheduled for allergy testing on July 8th with a doctor who is familiar with the reactions in EoE kids. Since they don’t tend to have normal reactions to skin tests you really need a doctor who knows this going in. The Clinic for Eosinophilic Disorders at Cincinnati Children’s tells me the doctor we are seeing is great so that makes me more comfortable. They will test for 60 different foods as well as 18 common environmental and seasonal allergens. I’m really curious to know what her environmental triggers are. This spring was horrific for her and I would love to know what was so different about this spring and why it affected her so badly!

If she is allergic to a lot of different things we may choose to go strictly with steroid treatments instead of putting her on a very restrictive diet. The steroids used are often used for the treatment of asthma but instead of being inhaled into the lungs they are held in the mouth and then swallowed to coat the lining of the esophagus. Of course, steroids come with their own issues like yeast infections and ulcers developing in the throat (which does not sound like fun!). And there really isn’t enough long term data to tell us what effect using these steroids for long periods of time have on the body. Especially since they aren’t FDA approved ways of being used. And, like with food elimination, once you come off the steroids the body will again start to react to foods and you will see a return in symptoms. Again, a vicious cycle. Some kids have to do both diet elimination and steroids to achieve “remission”. Others need just one or the other. Others, like I mentioned before have to stop taking any food by mouth period for a certain time, go on a feeding tube and try to reintroduce foods back in to the diet a few at a time. It’s a nasty, nasty disease. Of course, my prayer is that we’ll have it easy! She’ll only be allergic to 1 or 2 things (most likely in the top 6: wheat, dairy, eggs, soy, treenuts/peanuts, fish/shellfish) and we can control it with diet, avoid the steroids and learn to live with this disease. But I know that’s probably every parents dream when they start to learn the reality of what this disease does. I’ve already found some areas of support online, one being the Kids with Food Allergies website and their wonderful online communities there! I’ve also heard from someone that I grew up with who has a child with this disease and deals with the daily struggles of having a child on a feeding tube. She has been a great source of knowledge and comfort already.

So to end a really long post (sorry about that, there’s just no short way to tell this story!) our blog is officially back up and running! I’ll let you in on what’s going on with the rest of the family soon. This morning I just needed to get all of the thoughts out of my head regarding our little diva princess!

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