Matthew is a very happy young boy who loves to go to school and make people laugh. He takes pride in his school work and it reflects in his grades. He loves to swim and is on a swim team. He also enjoys riding bikes with his friends. Matthew has been a totally normal, healthy kid until late December, 2007, at 10 years old.
He started to complain about stomach pain constantly. The few months leading up to this, my husband and I noticed that he was looking bloated. We thought that maybe he was putting on a little weight. The beginning of January, 2008, the stomach pain became much worse and landed us in our local ER. They ran the usual tests to rule out anything life threatening. The one thing that popped up was his white blood count. The next few days, Matthew’s pain was increasing and nothing seemed to help him. We ended up at UCLA, where at first he was diagnosed with a virus. I knew in my heart, this was no virus. I didn’t know what was wrong with Matthew, but this was not a child that complained about being sick, ever.
After almost 3 weeks, they dove deeper into his “white-count” issue and diagnosed him with Eosinophilia. His blood Eosinophill levels were 40% higher than normal. The next steps were to see how bad his condition was through an Endoscopy and Colonoscopy. It wasn’t good. There were two Eosinophilic masses in his colon and a severely elevated Eosinophilic count throughout his gastric system (stool, biopsy and blood). Of course, we were in shock when our doctors told us that he had Eosinophilic Gastroenteritis and Eosinophilic Colitis. We had never heard of it and could barely spell it. We immediately researched the disease to educate ourselves. He was in extreme pain all of the time. His legs would shake uncontrollably and he couldn’t sleep. He would cry out in pain. They had him on morphine for pain, amongst many other drugs. He was pale, had a large distended abdomen, fatigue, night sweats, rashes, etc. I sat next to him every night in the hospital and did everything I could to make him comfortable. I would break down outside. My father-in-law came to the hospital every day. I don’t know what I would have done without him. He brightened Matthew’s days and mine too. My husband had to keep some normalcy for work and would come to the hospital every night.
During the next month, Matthew’s condition started to worsen. The Eosinophills had gone systemic and started attacking his bones, joints and muscles. Matthew wasn’t able to walk and was now wheel chair bound. He wasn’t able to stand to go potty and had terrible pains in his legs and arms. We didn’t know what he was allergic to at this point, so we weren’t removing anything. Unfortunately, our doctor’s just weren’t familiar enough with Matthew’s disease either and didn’t understand why all of this was happening. My father spent month’s on-line reading and researching anything he could about this disease. I don’t know what we would have done without him. We spent months in and out of the hospital until we spoke with Dr. Putnam at Children’s Cincinnati. We had Matthew’s biopsies sent over to confirm the diagnosis and get Matthew an appointment.
Because we live in California, he recommended that we go to Rady Hospital in San Diego because they could get us in immediately. They have a small Eosinophilic clinic and work with Cincinnati. Immediately, they took over Matthew’s case. We had received his allergy testing two weeks before our trip to San Diego and it showed positive for wheat, gluten, flour, oats and most grains. We immediately removed those foods. With-in two weeks, we started to see an improvement! A repeat Endoscopy and Colonoscopy showed a decreased level of Eosinophills! He started getting better for the first time in 6 months. He was finally able to go back to school.
January of 2009, Matthew became ill again, although we knew this time what we were dealing with. We had found some amazing doc’s at Cedars Sinai Hospital, who came from Johns Hopkins & CHOP and totally understand this disease (as much as anyone does). Low and behold Matthew had another allergy, this time it was corn. Ugh, corn was our alternative to everything! With corn, meant corn starch, corn syrup, and corn meal were all out. Most everything has corn in it, even Tylenol and Advil! This was a huge blow to us and of course Matthew. Why can’t the allergy be simple like a cucumber or an orange? Nope, it’s two large food groups.
Matthew’s case is a little unusual because most of the children inflicted with this nasty disease are much younger than him. Why did this just pop up? The hardest thing was telling Matthew that until there is a cure, you must stay away from these foods. No pizza parties, no sodas, no pasta, no birthday cake, no toast (I could really go on, the list is so long). He’s old enough and knows what all those foods taste like. He has his favorite types of food. I can’t imagine being his age, being so sick and then told you can’t eat most of the things you like. He took the news much better than I ever thought he would. I saw my child hold everything all together, to make us feel better. He is amazingly strong and is filled with so much hope. He would constantly say, “I can do this, I don’t want to be sick anymore and I don’t want my tummy to hurt anymore.” He just wanted to resume to normal activities, to see his friends and go back to school. He would have given anything for that.
Being an older child, it’s definitely challenged him emotionally and he had a small depression. I wanted nothing more than to take all that physical and emotional pain away. Matthew is a different child because of this – he feels blessed to be well enough to go to school and has compassion for those that are sick like him. He wants to get involved with organizations and give back. He is passionate about giving back. We are the lucky ones though. We don’t have to do the formulas at this point like so many children do. It seems that as long as we keep control on his allergies, his Eosinophills stay down, thankfully. We are currently on a corn trial, per our doc’s to see if by some chance he can tolerate small amounts of corn.
After going through all of this, our family inevitably changed. We stop to smell roses now. We try to never take things for granted. Things that would have made me stressed out before hardly affect me now. I watched my child suffer for months and months. I watched other children in the hospital suffer. There is nothing like watching a child suffer; I don’t wish that upon anyone. My family and friends came together immediately. They were there with us, comforting us, listening to us and supporting us. I am honored to be Matthew’s mom; he is the bravest person I know. I’m so thankful for CURED, the information and support is priceless. Thank you for all that you do for our children.