Well, we got the results of Aaron's endoscopy this week and we were pretty surprised. Basically, they were looking for a type of white blood cell (these are immune cells) called eosinophils which are active in allergic diseases like asthma and eczema. There are not supposed to be any in the esophagus. If there are more than 15 in a high powered field under the microscope, that is diagnostic for eosinophilic esophagitis. Aaron had more than 100.
My poor baby. I just feel so sad that he has been suffering all of this time. Most of the patient info I can find makes reference to kids having vomiting, which he never has had, but the nurse told me that the most common complaint of kids old enough to vocalize is painful difficulty swallowing their food. In researching this online, I have also found that the esophagus motility is compromised, so the food goes down more slowly. No wonder he feels full too early.
Treatment consists of changing the diet to eliminate potentially allergenic foods. Since we are already off of milk, egg, sesame, nut, seafood---they have decided to let us continue with his current diet. The other treatment option is mixing a small amount of steroid medicine with Splenda to make a "slurry" to coat his esophagus. That is what we are currently doing with the hope that it will help him to eat and grow. It is unclear what percentage of kids "outgrow" this and what the prognosis is. Some kids get it throughout their entire GI tract. Luckily, Aaron's stomach and small intestine looked ok. I did some research tonight, and the severity of some of the kids' illnesses shocked me. But, I think to be informed will help me to advocate for him. We will recheck his weight in 4-6 weeks.
I just could cry writing this. I am just so surprised---as a doctor, I suppose this diagnosis shouldn't be surprising, but as a mom, maybe I just felt Aaron had already survived so much, he should be "immune"! Ridiculous, I know, and it could be so much worse. We are so lucky for his great development and overall good health, in light of what could have been. But, just tonight, I am going to say it. I am really, really angry that he has to deal with this. Period.
We will take any and all prayers for a good response to his medicine...because the next steps are not fun...
lowongan kerja
8 years ago
2 comments:
I'm angry too. He definitely deserves a "get out of jail free" card after all he's been through. Thinking about you guys and wishing you a very happy mother's day. BTW - I opened the card and loved it :-).
Hello,
I came across your blog as I was looking info on EE!my daughter has EE and I understand how you feel!its not a fun thing to live with as a child or for the family!there are so many emotions that comes with this EE!just wanted to say you are not alone!hang in there and know that others face what your faced with as well!!
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