Thursday, February 9, 2012

Eosinophilic Gastroenteritis

Well we FINALLY have a diagnosis. I struggled so much two weeks ago with allowing them to do another colonoscopy on Sam. I had always felt like I let him down by allowing them to do it in the past and then it was always for nothing because they never found anything out. As I think about the last 3-4 years of his life (and actually all of his life there have been GI issues) I am shocked to think about the countless procedures, testing, blood work, etc etc etc that we have done. And always things came back inconclusive or "not normal but we don't know why." All that has finally come to an end. It isn't an easy diagnosis but it is a diagnosis none the less, and prayerfully one in which we can treat him agressively and get him on the road to recovery. I have been googling it and reading everything I can. This is what I know so far: -Very rare (of course it is because we don't do "normal" here:-); one website says that there are only 280 documented cases in medical literature. ( -the problem is that eosinophils (a type of white blood cell) are in areas that they shouldn't be, causing abdominal pain, diarrhea, cramping, weight loss, poor absorption of nutrients, and I also read it can cause hypogammaglobinemia!!! (Imagine if this is what has caused his immune issues as well? -there are 3 types, and I am unsure of what type he has, from the literature I have read, it doesn't seem like he fits easily into any of the catagories -the disease can go into remisssion but recurrance is common -treatment can include: long term steroid use, very very strict diet, or no food at all and only a specific formula for 1-3 months (I am desperately praying that we don't have to do the formula as many sites quote that they aren't able to drink enough becuase it tastes so terrible so they end up with feeding tubes Some of the websites that I have looked on and found out info are: I am relieved but also heartbroken for my boy. I just wish that I could take all of this from him. I wish he didn't have to struggle so much health wise. I wish that they could just fix him, or that God would heal him completely. He is such a trooper and so strong in dealing with all he does. I know that God has given him this amazing personality to deal with all of this conflict, and I am so thankful that he has such a peace in his heart while dealing with all of this. As of now we have to eliminate all dairy and eggs from his diet. Poor guy cried tonight when Sophia got to eat the last yogurt:-( So we will be definitely experimenting with some new food choices. If anyone has any recommendations about dairy free stuff we would greatly appreciate it As of now I have to bring in some stool for testing, and also some more blood work for him. We then are going to see two specialists next week. Beyond that I am not sure....I have also been looking into actual specialists that specialize in this disorder, and although CHOP in Philadelphia has a clinic for eosiniphilic disorders it doesn't talk much about Eosinophilic Gastroenteritis, it talks about Eosinophilic esophagitis...So not sure

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