I have mentioned before that I realize that we have not had much of a winter this year. The weather was unbelievably mild. That doesn't mean I am any less appreciative of the spring! Spring and summer are by far my favorite times of the year. i don't even mind the extra rainy days during the early spring. During the worst part of the winter, we (and by "we" I mean my awesome husband) are busy planning our gardens for the year. We double check our supply of canning jars and organize our planting charts for the season. By late February, we have seedlings started inside and are counting the days until we can start hardening them off. Once St. Patrick's day rolls around, the cool weather veggies, like the peas, are in the ground and already sprouting and the apple tree is pruned. The blueberry hedges, plum tree and fig tree have new buds growing and the forsythia is starting to bloom. As much as it sounds like a cliche, it is a time for new growth and possibilities.
This time last year, Cassidy, at the age of 6, had just been referred to a specialist at AI DuPont Children's Hospital. Friends and family would ask how Cassidy was doing, and we would say "Well, honestly, Cassidy isn't doing too well..." but we had no concrete answer as to why. She had been complaining of chest pain as well as a bad sore throat for almost 3 years without anyone being able to determine the reason. She always had circles under her eyes and she grew overly tired easily. She had a persistent dry cough, and frequently ran low grade fevers. By low grade, I mean right around 100 degrees, and by often I mean 3-5 times a week. Almost every week. She had already had her huge adenoids and enormous tonsils removed. It was a group of nondescript and fairly minor symptoms, but they never went away. She had never been a picky eater, but we noticed her eating less. While she has always been tall and thin (so are Mark and I), we noticed that she seemed even thinner than usual, so we took her back to the doctor, yet again. We discovered that she had been losing weight. Around the same time, she started having severe lower abdominal pain several times a week. Our regular pediatrician, despite the fact that all of the tests he had run for her came back normal, agreed that something must be wrong. He told me bluntly that no matter how long the list of normal test results was and no matter how minor and nondescript the symptoms were, that Cassidy was MY child, and if my gut instinct said that this was something bigger, then that was more than enough for him. All pediatric physicians should be as AWESOME as our guy.
And so, because the pain was in the chest (along with fatigue, coughing and weight loss) and in the tummy (along with sore throat, fevers and again, weight loss) he referred us on to the cardiology team and the gastroenterology team at the children's hospital. We saw cardiology first, and they quickly cleared Cassidy, which was a relief. Then we saw the gastroenterologist. At first, he was also stumped. He tried a few things, but nothing offered relief. Eventually, as symptoms escalated and we had no answers, he felt that he had no choice but to look inside. Cassidy was scheduled for an upper endoscopy and colonoscopy with tissue biopsies in June 2011. Even the doctor was not sure what he was looking for, but in his own words, a child living with daily pain and no known cause and therefore relief was, in his practice, unacceptable. Things looked fairly normal during the scope, so we initially felt relieved but also frustrated. If everything looked normal, what was the problem? Still, loved ones were asking, and we still answered "Well, honestly, Cassidy isn't doing too well..."
Then the labs came back.
That phone call, with the lab results, was the first time I had ever heard the term Eosinophilic Esophagitis. Quite a mouthful, although at this point even my 3 year old can pronounce it. While still considered a rare disease, as are all eosinophilic diseases, it is being diagnosed more often. This is what it means, in a nutshell. Eosionophilic Esophagitis, or EoE for short, is one of a group of diseases called Eosinophilic Gastro Intestinal Diseases (EGIDs), and is, in some ways, an auto-immune disease because it causes the body to attack itself. One distinct characteristic is that is triggered, usually, by food allergies, so in that sense it is an allergic disease. It is not characterized by traditional food allergies or allergic responses. When my daughter eats foods that she is allergic to, rather that a rash or wheezing, her digestive system, specifically her esophagus, attacks itself. The reaction can develop and intensify over weeks after a single or several days worth of exposure to a food. Her body releases a specific type of white blood cell (eosinophils) which then build up and infiltrate the tissues of her esophagus, causing damage. This causes inflammation, pain, scarring and in some people difficulty swallowing or episodes of dysphagia and impaction, or food getting stuck in the esophagus. It causes chest, throat and abdominal pain and can make food taste different and make swallowing very painful. In addition, sometimes the child feels full too early which, along the pain of swallowing, causes them to not eat enough. This can lead to weight loss, malnutrition, fatigue and stunted growth. Some children vomit frequently. These problems then lead to classic symptoms of lack of nourishment, including joint pain, headaches and bloating. All of this combined usually means trouble sleeping and mood changes (you'd be pissed all the time too, if you were exhausted, hungry and in pain).
To quote,
APFED, a patient advocacy and awareness group for eosinophilic diseases,
"Since none of these symptoms are specific for EGID, and many occur at
times in healthy children or adults, the diagnosis is generally sought
only after the symptoms have failed to resolve. Eosinophilic disorders
can mimic the symptoms of other diseases like inflammatory bowel
disease, food allergies, irritable bowel syndrome and reflux, among
others."
While not generally a life threatening disease on it's own, it is certainly life altering. Once we had a diagnosis, we had to determine the allergens. We kept a food diary for 2 weeks to help determine which foods we should test for, then we went though 3 different kinds of allergy testing. Scratch testing, which is histamine based, turned up peanuts and cauliflower. Blood testing, which looks for antibodies in the blood, also showed peanuts and added dairy and eggs. then we went for patch testing. This looks for a different type of reaction, one that is delayed and happens on a cellular level. Samples of actual foods are placed in small cups and taped to the child's back for 2 full days. Then they are removed and rinsed off. 24 hours later, the results are read. Sounds like nothing much would turn up with that type of waiting, but we were stunned. When we removed the samples, her back looked like this:
The next afternoon, when we went to see the allergist, one small area looked like the picture to the left. That big angry blister that would break open later and leave a scar for months? That was zucchini. To the left of it, with smaller but still distinct and painful reactions, were apples and bananas. The full list from the patch testing? Apples, bananas, cucumbers, cantaloupe, zucchini and corn. This is in addition to the dairy, eggs, peanuts and cauliflower. We have since determined that she can tolerate corn after all, but so far that is the only addition. Some foods, like zucchini and dairy, we can't even test for tolerance.
We had spent the summer growing our own organic vegetables, which she loves, and feeding them to Cassidy. Cauliflower soup, zucchini bread, cucumbers, you name it. Now we know that it was making her sick. Very sick.
By August, we had the full list of foods that she had to avoid, and we were very strict about it. She is not a picky eater, but in addition to the difficult symptoms associated with the disease, we had to remove dairy. Soy and rice substitutes were fine with Cassidy, but lack the fat content of dairy. By September, the nutritionist told us that if she lost any more weight, literally one more pound, we would have to seriously discuss placing a feeding tube. We barely avoided that, but while she reported an improvement in the chest and throat pain, her bouts of lower abdominal pain were becoming more frequent and severe. I'll cut to the chase. Her repeat upper endoscopy in November showed normal biopsies of her esophagus. The dietary restrictions and medications worked, and as long as she sticks to it she should be OK. She could develop new allergies later, but that can be dealt with when the time comes. Her colonoscopy, however, showed mild to moderate microscopic inflammation throughout her entire colon. In the first set of scopes, there was inflammation but it was patchy. The fact that it is now covering the entire colon means that it has gotten worse. By now she was already on anti-spasmodic medication (to control painful muscle spasms) as needed for pain, and she was needing it 3-5 days a week. As a result of the test results, she has since been diagnosed with microscopic colitis, and is now on additional medication, commonly used to treat more pronounced Inflamatory Bowel Diseaeses like Crohn's Disease, for that. It seems to be working, and she is needing the anti-spasmodic meds less often. She also reports to us that while she still always has lower abdominal pain, it is less severe than it was. She has gained 7 lbs since September and is feeling better in general.
Compared to many children with EoE, Cassidy's presentation was not terrible. Some children are allergic to almost all foods, and get all of their nutrition through feeding tubes. Some get sick at a much younger age and some do not respond as well to the treatments. As far as the colitis, it is also considered by some doctors to be an auto-immune disease, meaning that the body's own immune system attacks itself. Earlier in this post, I quoted APFED as saying that eosinophilic disorders
can mimic the symptoms of other diseases like inflammatory bowel
disease, food allergies, irritable bowel syndrome and reflux, among
others. They can also happen IN ADDITION TO these other diseases, which is important to remember since the treatments for the different diseases vary. The dietary restrictions and medication for Cassidy's EoE carry no side effects, however her Crohn's meds do, and Cassidy does experience some of these including headaches, dizziness and mild nausea. She says, however, that the relief that she gains from the medications is worth the side effects. Neither disease is one that will be outgrown. Microscopic colitis, like Crohn's disease, has remissions and flares, but is commonly life long. EoE is not typically outgrown, although allergens and triggers can change over time.
This year, we planned the garden without zucchini and cauliflower, at least for now. We don't all avoid all of her allergens, but we do try to avoid flaunting her absolute favorites right in front of her. She has done a great job as far as adapting to her situation, and is very responsible about following her dietary restrictions. She reads labels herself and if she is unsure of ingredients she just eats something else. She has told us that at one point before she was diagnosed with EoE, she felt so sick and was in enough pain that she thought that first scope would end up diagnosing her with cancer, so when she does get frustrated, she remembers that and her the current situation is actually a relief. This is her own perspective, and she is now 7 years old. It reminds me to be to be thankful that while her diseases are life altering, they are not generally life threatening, and that as many times as we have gone to the hospital and O.R. for tests and procedures, we have all come home together.
Many times, people have asked me exactly what the situation is with Cassidy and her illness(es) and food allergies, so I thought the simplest way to explain to many would be to lay it out here. This is definitely an abbreviated version of our story, so I absolutely welcome any questions or comments that any readers or friends may have. In the mean time, putting all of this into writing, especially Cassidy's own perspective, reminds me of one thing that I believe strongly in, which is that gratitude makes what we have enough. Also, perhaps it will help my readers to understand why I'm only posting once every week to 10 days. You see, In addition to Cassidy, I have 3 other children. The twins, Quinn and Chloe, will be 5 in several weeks. How are they, you ask? Well, honestly, just like Cassidy at this age, now it's Chloe that isn't doing too well.
All of these are chronic diseases requiring long term treatment, with no known cure. They are also not something that people who suffer from them will "outgrow".
