Time to say goodbye to dairy...again...

One thing I have learned about Gavin's disease, Eosinophilic Esophagitis (or EoE), is that like a roller coaster, it has ups, downs, twists and turns, and even when you know a drop is coming, it still takes your breath away.
Over the last few years we have been able to determine that dairy and soy are the biggest food triggers for Gavin's EoE. With both foods eliminated, and a daily dose of swallowed steroids (Flovent), we achieved a biopsy report of 0 eosinophils...that of a normal esophagus, which was a tremendous win. For over 2 years, Gavin continued the elimination diet and allowed his esophagus to heal. He felt great, but emotionally, he was struggling with the diet. He was depressed about the foods he was missing, and it was starting to bother him more and more when his treat was different from the class, or he had to pick from his special snack bin instead of sharing in the pizza party or cupcake celebration.
In August of 2013, we decided to trial dairy. We had removed dairy and soy at the same time, so there was no proof that both were doing damage, and it was worth figuring it out. The very first thing Gavin wanted to do was go to his favorite Mexican restaurant and get chips and cheese dip. He was in heaven. The results of the biopsies a few months later showed that dairy was doing about half the damage, which is pretty much what we expected. After reintroducing dairy, his eosinophils were no longer 0, but they weren't as high as they had been before eliminating both foods either...and he was so happy. After a discussion with his GI about quality of life, emotional health, and physical health, we all decided to let Gavin keep dairy even though it was still causing damage. He was instructed to be vigilant about his daily medication and still eliminate soy.
We have had a wonderful and easy 2 years. Cooking and eating out have been so much easier with only soy eliminated, and Gavin has thrived emotionally. Over the last year though, his symptoms have slowly gotten worse and worse. He now complains daily of stomach aches, headaches, fatigue, and sleepless nights. With each complaint, I remind him that the dairy he is eating is causing him to feel bad, and that when he's ready to feel better, we can go back to eliminating dairy. It is important to me that he feels some control over this decision, because ultimately, I can't be there all the time, and if it's not his choice, he is going to be more likely to 'cheat' when he is at school or friends' houses.
Tonight I laid with him in his bed, as I always do, and we were ending the day with snuggles and talk. He said he was tired of his stomach hurting all the time, and he was ready to remove dairy again. I knew this day was coming, and I know it needs to happen for his poor little body to heal, but hearing him say he was ready just broke my heart. It hurt because it tells me exactly how much pain he is in all the time. If you have any idea how much this kid loves cheese, you know he's hurting if he's ready to give it up. At the same time, I had such admiration for his grace and courage. I told him that I was proud of him, and that I knew it was a hard decision. Gavin replied with "yeah mom, hard but good". What an amazing kid.
He has decided that this weekend is when it will happen, so we will make a trip to Whole Foods and stock up on 'safe' foods, and begin again. As I lie here typing in the dark, because I can't sleep, I am thankful for the last 2 years. Watching Gavin live a more 'normal' life gave me an emotional break from this disease. I was able to heal and grow stronger so that I could be ready for this next round. Tears fall tonight for my sweet boy and what he endures, but tomorrow they will be dry, and I will be his cheerleader.

Tomorrow is a big day for us. Gavin is scheduled for an endoscopy, a procedure we refer to as a 'scope', to check the status of his disease. When it comes to Eosinophilic Esophagitis, or EoE, what you really want to know is how many eosinophils (a certain type of white blood cell) are present in the esophagus. A scope is the only way to find out.

Here is my non-medical explanation of how I understand this procedure...

Gavin will be put to sleep, and his GI doctor will go into his esophagus and take both pictures and samples. The pictures are the only immediate feedback we will get tomorrow, but can be very misleading when it comes to EoE. The truth lies in the samples, or biopsies, which are sent to a lab. At the lab, a stain is added, which makes the eosinophils dark and easy to see. A pathologist will count how many eosinophils are present per high power field (HPF) for each biopsy, and reports the number back to the doctor, and then to us. A healthy esophagus has 0 eosinophils. An active case of EoE is typically 15 or more eosinophils per HPF. This is Gavin's scope history:

Scope 1: September 2010 - 59 eosinophils - diagnosed with Eosinophilic Esophagitis.
Decided to try treatment with topical steroids only, no change to diet

Scope 2: May 2011 - 53 eosinophils - steroid treatment alone is not a success
Changed type of steroid and removed dairy and soy from diet

Scope 3: September 2011 - 0 eosinophils - current treatment a success
Decided to keep going with current treatment and allow his esophagus to heal

It has been almost 2 years since that glorious scope with 0 eosinophils, and I'm terrified of what this one will bring. Best case scenario would be another clean scope, and we would be able to decide if we want to try and remove the steroids or add a food back into his diet. Worst case scenario would be anything else. Okay, I'm being a little dramatic, and if you read this far into my post, you probably know me well enough to expect it. Kidding aside, I'm very afraid right now. This disease is so unpredictable that it is impossible to prepare yourself, and that to me is the scariest part. I don't want my baby to lose any more foods, or even have to go another day with the ones he currently lives without, but the bottom line is I just want him to be healthy enough to enjoy his childhood. The procedure tomorrow has its own risks, those of anesthesia, and the risk of a perforation (tear) in his esophagus. For now, I'll just focus on getting through tomorrow, enduring the long wait for the magic number, and then moving forward from there. Deep breath...

It's scope time again

Here we are again...the day before a scope. My friend Glendia keeps asking me if I'm nervous yet, but I've decided to go with the mentality of 'what's the point'? It doesn't matter how you prepare yourself before a scope...you're never ready for the news. I figure that since the last one showed absolutely no improvement, I'm hoping for the best and preparing for the worst.
After our original diagnosis, we tried just treating with swallowed steroids (pulmicort splenda slurry). We thought we were one of those unique cases of EoE where Gavin could eat anything as long as he took the steroids. Well, we were wrong. So, we took a baby step down the road of food elimination diets. While most doctors would recommend taking the top six allergens away right from the start, our wonderful GI gave us a more palatable option of only removing dairy and soy to start. Since Gavin has eaten all foods his whole life, and since the thought of providing top 6 free meals was daunting to me, we felt this was the right choice for our family.
Removing dairy and soy from Gavin's diet was challenging at first (to say the least), but with the help of friends, online support, and many natural food stores within our reach, we learned quickly and adapted. Gavin immediately started eating more and having an appetite again, which was encouraging. In addition to the elimination diet, we also changed his steroid treatment to Flovent. The Flovent comes in an inhaler and would typically be inhaled for asthma treatment, but since the inflammation is in Gavin's esophagus, he puffs the medicine into his mouth and then swallows it, instead of breathing it in. The main side effect of swallowed steroids is thrush, a yeast infection in the esophagus, since he can't eat or drink anything after taking it. We did have a bout with thrush already, but the 21 day treatment cleared it up.
Unless this scope shows no eosinophils, we will proceed to the full top six elimination diet, which means removing wheat, eggs, fish/shellfish, and peanuts/tree nuts. It will be a hard transition, especially for Gavin, but I have much more confidence now than I did when we faced this option a few months ago. I'm praying like crazy for a miracle because no mother wants to take food away from her child, even when it is to make them better. The next few months include many holidays focused around food and Gavin's 6th birthday, and it breaks my heart to think about how it will be, but I have to stop myself from looking too far down the road yet. Let's get through the week and see what the numbers are, and then we will hold tight to each other, draw strength from God, and face whatever comes next.
Thank you all for your continued prayers and support. It carries me through the hard times and helps me focus on how lucky we are for what we do have, which is a lot of love. I'll update tomorrow and let you know how the procedure goes.

The time has come to start eliminating foods...



EoE buddies



Where to begin. Well I guess I should first apologize for taking so long to post the results of Gavin's scope. As many of you who deal with EoE know, no matter what you prepare yourself for, it never quite goes the way you think it will.

This was Gavin's second endoscopy. His first scope was last July when he was diagnosed, and this one was to determine if the swallowed steroid treatment was working. Going into the procedure, we were hoping for a clean scope, meaning no eosinophils and no inflammation or furrowing, but would have been happy with a low number. The scope experience was much more fun this time because Gavin's friends Camden and Lawson were scheduled for their scopes on the same day, and I'm friends with their mom, so the boys and I both had some support. We saw our friends, got Gavin prepped, and then I held his hands while he went to la-la land. There I was again, sitting in the consultation room waiting for news while I entrusted the nurses and doctors with my child's life. Last time, the waiting was the worst part. This time, the news was the worst part. Gavin's doctor came into the room and said that Gavin's esophagus looked like one of a newly diagnosed EoE patient. My heart sank. I knew that we would have to wait for the pathology results from the biopsies, but he was basically telling me that it looked like the steroid treatment had done nothing.



in recovery



"Don't be discouraged" were his words to me. So I tried to hang on through the next two days while I waited painfully for the numbers to come back. Two days later I spoke with the nurse and she told me that Gavin had 53 EOS (eosinophils) per HPF (high powered field). There was no miracle. The numbers only confirmed what the doctor had seen. There was very little change from his first scope, where he had 59 EOS per HPF. I didn't know exactly what this meant for treatment, but I knew the steroids alone were not doing the job. Our GI doctor was going to consult with our Allergist to discuss increasing the steroids, eliminating foods, or both. By the time I got the call from the GI, I knew what we were going to have to do. In the words of my 7 year old daughter, "Gavin's not one of the lucky EoE kids who can eat anything anymore, is he?"

So it's time to start making some tough decisions. I knew the day would come, but I really thought we had more time before we had to take foods away from Gavin. Both doctors think we should begin an elimination diet, one just proposes a more conservative plan than the other. Gavin's GI thinks it would be okay to start by removing only dairy and soy instead of all of the top 6 EoE allergens (milk, soy, eggs, wheat, peanuts/tree nuts, and seafood). We have an appointment with the allergist tomorrow, so I'll have a better idea of his suggestion, but it sounded like he typically recommends removing the top 6. We also have an appointment with the nutritionist to make sure Gavin gets what he needs as we remove foods. There are many many families out there who deal with food allergies, whose children can't eat what other kids can, and who have to tell their kids no for their own good, but this is a big first for our family, and it's a sad day.

For now I will remind myself that my child still gets to eat food. That as of today, he has no tubes going into his body to give him the nutrients he needs to grow. I will be as positive as I can for him, and remind him that these changes are to help him heal and feel better. I'm a 'glass half full' kind of gal, and I know it could be (and probably one day will be) a lot worse. But today I mourn a loss for my child as I prepare to take something away from him instead of giving to him, and I curse this disease. I will have a good cry tonight, and tomorrow I will look on the bright side.

Where I'm at...

I started this blog 6 months ago. I thought it would be a good place for me to express my feelings and possibly a theraputic way of dealing with our new normal. The thing is, I haven't written very much. I've been thinking about it lately, and trying to figure out why. I think it is because of the extremes of the past few months. Some days things are going so well that I don't really have much to write about. Gavin is eating just like he was before, and other than his new steroid 'slurry' that he takes twice a day, things really haven't changed that much. On the flip side, when it's bad (either because he's sick or I'm overwhelmed with doctor appts/medicine refills/research) there's no time for telling stories...it's just basic survival, and trying to figure out this EoE monster and how it works so we can beat it, or at least take less of a beating the next time it hits.

The extremes are tough. Some days we go about our day just like everyone else. There is lots of laughter in our house, lots of tickling, lots of sibling bickering, all of those things that make happy family memories. And then there are the days where I throw myself into learning more about this disease and can't do anything else...to the point that real life is just passing by in the meantime. I guess the bottom line is that 6 months ago I was told that my child, my baby, had an incurable illness that we will fight for the rest of his life. That moment changed everything, yet nothing changed.

This week is a very important one for our family, and not only because it is National Eosinophil Awareness Week. It is also Gavin's first endoscopy since the one last July that led to his diagnosis. Since the only way to really tell if his treatment is working is to biopsy his esophagus, this will tell us if the steroids are working enough or not. I'll try to quickly explain my understanding of how this goes. During an endoscopy, they will biopsy multiple locations in Gavin's GI tract. Each biopsy will be sent to a pathologist, who will look to see how many eosinophils (EOS) are present per high powered field (HPF). His first scope last year showed 59 EOS per HPF. If this scope shows no EOS (maybe 1 even), they would consider him 'in remission' and we would continue treatment. Anything more than 0-1 will mean some decisions on our part. A count in the single digits or even low teens might mean that we have it mostly under control, and any count above that means the steroids alone are not doing the job, and we may need to talk about taking food away. I'm trying my best to stay calm, knowing there's nothing I can do by worrying, but I have this sick feeling in my stomach that I just can't shake. At times like this, all I can do is draw on my Faith, my Family, and my Friends.

Thank you all for taking the time to read this. The blessing here is that I don't take a moment for granted. I tell my kids I love them until they don't even hear me anymore. I kiss them until they squirm away in protest. I say yes when Gavin wants to play with Legos and I'm folding laundry. And I lay there an extra few minutes after they fall asleep to soak it all in, to thank God for what we have, and to draw from those moments the strength to get through the next day.

NEAW

Today is the first day of National Eosinophil Awareness Week. My 5 year old son Gavin was diagnosed with Eosiniphilic Esophagitis (EoE) in July of last year. Gavin is one of the luckier EoE kids as he can still eat food, but that is not the case with many of these kids and adults. In an effort to raise awareness, I will be sharing information throughout the week about Eosinophilic Disorders.

 

Please take a few minutes to watch this video and come back each day this week to learn more!

 

From the bottom of my heart,

Elise

EE is now EoE…What’s up with that?

"You may have noticed that APFED is now using the abbreviation EoE for eosinophilic esophagitis. For many years, both EE and EoE were used in the medical literature and by the medical community to denote eosinophilic esophagitis. Eosinophilic esophagitis was primarily described in the pediatric literature, with the “EE” abbreviation catching on quickly. However, adult gastroenterologists had long been using the abbreviation “EE” to denote erosive esophagitis, a problem associated with GERD.
To avoid confusion, the leaders and researchers in the field suggested using EoE as a unique identifiable abbreviation to denote eosinophilic esophagitis. Thus, going forward, expect to see “EoE” as the accepted abbreviation for eosinophilic esophagitis."
-taken from the APFED Spring 2011 Newsletter. If you are not a member, join today for access to the full newsletter and to support the cause http://www.apfed.org/