Quick story- our lil guy was diagnosed with eosinophilic gastritis (EoG) at 7 months old. After we received the diagnosis, and his health turned around, the first and best piece of advice we received from his physician was to chill out and enjoy him. By this point, he had become an incredibly happy baby, and while we were still terrified (and overwhelmed) from all he'd gone through, he was good: smiling, giggling, and loving life. It was very sage and wise guidance; till then, it had been challenging at its best, heartbreaking at its worst. Though nothing in comparison to what he must have felt, watching our sweet baby not thrive and decline had torn us up, and our lives had become a circus of appointments, labs, tests, insurance claims, and worry. So hop off the internet and enjoy our kiddo we did, and since then, it has been an absolute thrill to watch him thrive and grow and knock out milestones on baby fast-forward. While the lows were low, the highs have been even higher. In just three months, he's improved from failure to thrive to practically chubby, has an appetite that can be pretty darn impressive, and will charm everyone he meets. Likes- doesn't love- food, and not yet a fan of sleep. Both are getting better, though. Loves bathtime, his older toddler brother's toys, talking to the dog, chasing the cats, and pulling up on anything that is stationary for longer than two seconds.
Now that the dust has settled, and after some recent "flare ups," we are wanting to learn more about managing this chronic condition. It has been surprising to see what little information exists that describes EoG, especially in children. Our medical community is all over the map as well as to how this is managed short-term/long-term in the general community. There are a few national centers, and all have huge backlogs of patients. So the answers depend on the day and the person at the other end of the phone, and, frankly, what we find on the internet. My hope is that by starting a blog, we can organize information that we find, perhaps meet other families, and create a resource that helps us, our loved ones, and others. I'm not sure where we will take this site- will it become a journal? Will we find new resources? Will it be boring and just a few posts, as perhaps this will calm down again, and really won't be a big deal after all?
Best factoid we've learned so far- anecdotally, these kiddos have been noted to be very happy and have a wonderful outgoing disposition. "Hyper alert" was on one progress note (and this was from a physician who he threw up on three times in one visit). And "happy" is our baby. Sure, there's no science behind this, but reading- and living this- this makes ME happy.
Some introductory sites-
What is EoG? The American Partnership for Eosinophilic Disorders website is the best site we've found: http://apfed.org/drupal/drupal/e-learning-center
Eosinophilic Disorders and Children- This webinar series focuses on EoE (eosinophilic esophagitis), which is more common and more studied than EoG, but is the best resource we've found: http://apfed.org/drupal/drupal/webinar_series_spergel
- What role do food allergies play in EoE? Will some patients outgrow their food triggers? How does a parent know when their child is responding to a treatment?
Sites for Infant Allergy Management? First, it is so key to stress that allergies and intolerances are not the same. And while an allergy is very treatable, it is also scary and adds an extra layer of "mama bear" protectiveness. Our lil guy has a dairy allergy, which is one of the most common (both in all infants and for EoE/EoG kiddos), and if we drop a crumb, he is the first to crawl right to it.
From what we understand, children with eosinophilic conditions will most likely not outgrow their allergy. There is little research in this area, and the consensus is that a ballpark of 10% of EoE/G kids will outgrow their trigger, and it appears variable on the allergy. In our son's case,and this is in contrast to most babies with dairy allergies, his has a lower likelihood of resolving. Thus, this will most likely be chronic.
This is a big topic, probably for another post, but in the meantime:
- American Academy of Pediatrics- http://www.healthychildren.org/English/healthy-living/nutrition/Pages/Food-Allergies-in-Children.aspx
- Medicine.net- http://www.medicinenet.com/food_allergy/page4.htm
- Dairy Allergy Management (medical food- formula, supplements, etc.)- http://www.neocate.com/help-for-parents/learn-about-conditions/cow-milk-allergy/
Feedback is welcome- what kind of posts would be useful?
