Hope… Love… Cure…

As I sit and type this month’s blog post with my little one snuggled next to me, I can’t resist the smile on my face. A permanent smile that comes from the love and joy of being the mother of a sweet 4 year old boy.  I am so very thankful for God’s grace and for Him blessing me with the best gift of all, a child.

I normally don’t talk about all the trials, the ups and downs we have had over the past few years with Dawson’s EoE (Eosinophilic esophagitis), but I feel led to mention it in this weeks blog. This week is National Eosinophil Awareness Week. Besides no cure, the biggest problem is there is not enough awareness of this disorder. Due to the lack of awareness, it took us 2.5 years, lots of trips to specialist after specialist (some out of state), and test after test before Dawson was diagnosed on June 4th, 2011.  Even today, in a town of over one million people in San Antonio, there isn’t a clinic that specializes in patients with Eosinophillic disorders.

We have had a few steps back lately with Dawson, due to the high count of the eosinophils still in his body. He started back vomiting and was constantly regurgitating his food. Thankfully his wonderful doctors back home at Arkansas Children’s Hospital were able to call him in some medicine and get his stomach moving again. The amount of eosinphils had caused inflammation in his gut which in turn, makes his gut tired of doing it’s job. I feel so blessed to know that if you look at Dawson you can’t tell that anything is wrong. He has been off  formula for 8 months and has been eating enough on his own to gain weight. We are so blessed compared to the thousands of other kids who have this disorder. Having allergies myself, I am able to understand a lot of Dawson’s needs. There is a big difference though in the basic food allergies I have and the allergic disorder Dawson has. I can take an epi-pen if I come in contact with the foods I am allergic to and continue on. That’s not an option for kids with EoE. It’s a more complex and  unpredictable disorder. There is not a cure at this time for Eosinophilic esophagitis.  For the past 2 years Dawson has had a (EGD) scope with biopsies every 4 – 6 months to check on his Eosinophil levels. Some tests results come back fantastic and then 6 months later test results show they are high again. It’s the many unknowns that makes this disorder so scary to parents. How many foods are we going to have to take away, how many more years of scopes are we going to have to put Dawson through? It’s just a little disturbing not knowing what all Dawson is allergic to and the fact it can change at any time.

Here’s a note I found on a blog I read, I thought this blogger explained EoE best….

“Allergies aren’t that big of a deal. Right? What if you couldn’t eat some foods or even any food at all? This is the struggle many  children are facing. A nefarious and unpredictable disease called Eosinophilic Esophagitis (EoE) where all food can be the enemy. It’s incredibly ironic that the one thing that is supposed to sustain us can actually be the one thing that hurts us. If he drinks milk, the white blood cells attack. If he picks up a cookie off the floor and eats it, the white blood cells attack. If he nibbles a little chocolate egg, the white blood cells attack. When the white blood cells attack, they strike his digestive system, destroying his little esophagus, inflicting severe tissue damage and creating pain few can imagine let alone bear on a daily basis. That is the nature of this disease which was only discovered 10+ years ago. Food is life. We need it. We celebrate it. In our family, it’s dramatically different. Food is approached with caution. Moms and Dads evaluate every single type of food that is put to their child’s lips . It is constant diligence and it is exhausting. What most families take for granted in sharing a meal, EoE families have to read a label for ingredients, prepare it without cross-contaminating it, and hope it won’t make their child sick. Trying to stop a child from the innocent act of wanting to eat something, is difficult. Food is about socializing. When we meet, we eat. When we gather, we eat. When we have fun, we eat. Some children with severe EoE are allergic to all foods. They survive off an amino acid-based formula which provides nutrition. It provides no taste (bad taste), no pleasure, and no sense of fulfillment. The biggest challenge right now is that few people have any understanding of the complexity of this disease and how it impacts small children physically, mentally, and emotionally. One day, this childhood nightmare will be eradicated from our world. But today, we need to educate people about EoE and build awareness so that funds can be generated for research to help the little ones who rely on us. Help us get the world of EoE into mainstream America.”

I have to say Dawson is truly our HERO. He has had more procedures than Nick and I put together. He handles getting put to sleep for the scopes like a pro and he hardly complains about not being able to eat anything that includes Milk or Soy protein. He also doesn’t let it bother him that other friends get to eat the things he doesn’t.  His attitude for fighting Eosinophilic Esophagitis is a true blessing!!  We will be traveling the 10.5 hours back home next weekend for Dawson’s 6th EGD. The Eosinophilic Disorders Clinic at Arkansas Children’s Hospital is absolutely wonderful and has truly been the biggest blessing to our family! There are only a handful of Eosinophilic Disorders Clinics in the United States, so what a blessing it is for Arkansas to have one. From failure to thrive to a healthy 4.5 year old toddler…we sing the praises of this wonderful hospital, it’s doctors, nurses, researchers and staff.

 

 

Blessings,

Chel

 

 

 

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