This is Brooks.
photo courtesy of Amanda Armitage Photography
Brooks is what you would call a "medically complex" or "special needs" kid. He's two years old, and was recently diagnosed with Eosinophilic Esophagitis, an EGID disease which I'll talk a little bit about in a moment. He also has hypotonia (poor muscle tone), severe eczema, a number of "traditional" food allergies, sleep apnea, failure to thrive, and a few developmental delays. In total we see 17 doctors and 3 therapists to try and understand him better and support him with all of the things he needs. If that sounds like a lot, it is, but it's also peanuts compared to what some other families with complex kiddos go through.
We all know that we each have our own set of circumstances, issues, problems, and blessings in life. Whether your kid is the one that hits every milestone on time and never gets a cold, or is the one that if there's a rare disease to be found chances are he or she has it... wherever you fall on the spectrum of need, we all need a community. We all need support. We all need someone to show us the way once in awhile, tell us it's going to be okay, or just listen to us cry. Those needs are what led me to seek out so many resources when we were looking for answers for Brooks.
The internet is a crazy, scary place when it comes to (among other things) health and parenting. I'm sure we've all fallen down the late night Google rabbit hole at least once, right? Banging our heads against the wall, convincing ourselves that surely our child is dying from whatever disease that is, feeling so isolated and alone --- and holy cow --- why isn't there anyone to stop us from doing this to ourselves?
Well, I'm here to stop you. And you'll in turn stop me. We'll stop each other, and then we'll stop the newly diagnosed family, together.
I don't have your answers. I am not a Doctor. I cannot give medical advice.
But what I can do, what we can all do for each other, is share our stories, highlight the useful resources and research we've found, bounce our LOCAL referrals off each other, and remind each other to turn Google off for the night at promptly 8pm. So what do you say? Let's do this.
To be added to the "It Takes a Village" Facebook group, Click here.
Interested in helping moderate the group? Shoot me an email here.
Lastly, if you're not subscribed to the GP Mac Kid newsletter, do it here so you can follow along my journey with Brooks. I look forward to sharing our resources (and struggles) along the way, both in a bi-weekly blog post here on Mac Kid, and in the facebook group. Thank you for joining us.
XO
Andrea
More about EGIDS: Eosinophilic Gastrointestinal Disorder (EGID) is a complicated digestive system disorder in which eosinophils, a type of white blood cell, are found in above-normal amounts in one or more specific places in the digestive system and/or the blood.
When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.
These rare diseases are diagnosed according to where the elevated levels of eosinophils are found:
Eosinophilic esophagitis (esophagus) -----> This is Brooks!
Eosinophilic gastritis (stomach)
Eosinophilic enteritis (small intestine)
Eosinophilic colitis (large intestine)
Hypereosinophilic syndrome (blood and any organ)
