Interestingly enough, twice in about a month there have been news articles about children suffering from Eosinophilic Esophagitis- what Micah has been diagnosed with. We saw his GI today, first check up for him since he was diagnosed at the end of January. (But I won't expound on my frustration with that!) Doctor was happy that Micah was growing along the same curve and seems to be doing better. I expressed concern that we weren't certain that the steroids were making a difference that maybe it was only the PPI (Proton-pump Inhibitor) that was making the difference. So he suggested removing the steroid and seeing how he does. He said his goal is to make Micah as comfortable as possible on the least amount of drugs. Good, that's what we want, too! But it seems like that is the only thing we agree on. Well that and the fact that frequent scopes aren't high on the list, especially since they use general anesthesia. But as his parents, we want to attempt to find the food(s) causing the reaction and eliminate them and perhaps he can live a normal, healthy life without ANY drugs and just a more restricted diet. His GI seems to think that is unlikely. He also has stated while we will monitor his numbers (the number of eosinophils in the esophagus) and continue to watch for damage in the esophagus, he doesn't really think numbers are a big deal . How the child feels is more important (hard to truly know with a 2 year old!!) And we agree it is important to watch for visual clues of improvement or decline...but we want to see improvement in numbers. The doctor stated basically that many GI docs will be very concerned with gettting the number to 0 and he thinks that is unecessary. Why? to prevent future damage. Well, sir, to be honest...that's why we care. He's 2. We are thrilled to have caught this so early. But we feel that gives even more responsibility to get it under control while we still can! He even directly said to me that he feels it is more important to directly focus on and treat the symptoms. And THIS is exactly what is wrong with the medical commuunity these days!!!!!
So, we are in the process of having Cincinnati look at his case and praying they will take him as a patient. Bryan and I both feel that they are a much better source of information and treatment and really want to feel like we have doctors more concerned with helping our child, not drugging symptoms!
As for Noah, I think I forgot to mention he tested negative for EE. (Which you probably assumed from the lack of info!) Milk is definitely a no way, but he is doing much better without the milk in his diet. However, we are still having a lot of issues with him and he saw the GI today, too. He wasn't too concerned until he saw he lost weight in the last 2 months. They didn't say how much and the kids were not well behaved today during the appt so I wasn't of the right mind to ask. But, he had blood drawn and said if that is all normal he's not going to worry at this point. I'm so desperate for answers, whatever they may be. I'm just one of those people who needs to know. Suspense kills me. In movies and in books...and tremendously more so in real life!
So here are the links to the stories if you are interested- this is what we want to prevent!
http://www.cnn.com/2012/04/18/health/feeding-tube-allergies/index.html?hpt=hp_c3
http://www.andersoncooper.com/2012/03/22/a-boy-allergic-to-food/
This second link is mostly 2 video clips and admittedly very dramatized. Not downplaying the severity of the disease for this child, I just thought the videos were kind of cheesy- but also show how damaging and life threatening this can be.
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