Monday, January 14, 2013

I am back to blogging under a new blog. My life has changed drastically over the last few years. The most recent changes have been for my children. My daughter has been diagnosed with a rare autoimmune disease called eosinophilic esophagitis. What this means is that she is allergic to food on the inside of her body. This all started on October 5th when she texted me while I was bowling that she was in massive pain. I came home and she had a slight fever and pain in her lower right quadrant. I took her to the ER and they ran all sorts of tests on her and said nothing was wrong and sent us on our way. I was like okay. A few days went by, and her pain was getting no better, so they sent her for a CT scan and said she is constipated on the verge of intestinal blockage. Give her Miralax and she should be fine. I give her the miralax and she still only has one bowel movement a day and still in massive pain. After a week out of school, she goes back still in pain.

 Later in the month, we go to a bowling party and the next day, daughter wakes up complaining of massive pain in her upper right quadrant. Take her back to the ped and was basically told she has a benign stomach and there is nothing wrong and that she needs to go to school unless she is vomiting and that she is using this as a ploy to get out of school. Okay, daughter is an 98% grade point student, EVEN with missing 13 days of school! So fuck that line of crap. The ped orders blood work anyway. Get the results back and the doctor says she is fine, but I looked over the results and see her bilirubin in high. This makes me go hmmmmm. Well I am not a mom to sit around and take a let see what happens approach. I have done that for a month and my child went from 144 to 128 pounds in 4 weeks and her ped was throwing around anorexia at us. Um no, my child likes to eat; eating hurts her-so why eat?

I needed to find an answer for my child. I needed to be her advocate. Anyway, found a GI doctor (not a ped GI specialist-I wanted someone to think outside of the box) and showed him the results of her blood work. He ordered an ultrasound of her entire abdominal cavity, special blood work (to rule out cancer b/c of how much weight she lost in a short amount of time). Those results came back good-thank goodness. She was still having pain and then he ordered an EGD. They scoped her esophagus and upper stomach. He told me there was ulceration and inflammation in her esophagus and stomach. She had to be on antacid medicine. Went back 2 weeks later once he got the biopsy report. We had an answer-she has high level of eosinphils in her esophagus and stomach-none are suppose to be there. His recommendation is to do an iummunoassay blood test called ALCAT. (more on this whole ALCAT test a later date) We get that test done right before Christmas. All I am thinking during this time, is that I hope for the cost of this test (I had to pay for the test upfront) they find something. Well they found a lot that she can't have, but then to spin it on the positive there is still a lot she can eat. The doctor also told us, that while this is a life long disease, there will be foods on the 'green' zone that might cause her trouble one day, so always keep on eye on her. He also asked daughter if she has trouble swallowing. Yes she does. One complication to EoE is there is trouble with swallowing and might need her esophagus dilated to prevent food from getting stuck and causing choking.

 I did get joy out of going to her ped and telling the ped that daughter does in fact have a real issue with her stomach and this was not made up ploy to get out of going to school. The ped was shocked when I told her she has EoE, but the ped didn't apologize to us for her attitude back in October and just asked Demi on how much she planned on losing???? WTF? My child is not trying to lose weight, she can't eat-she loses. She is becoming a failure to thrive child. So as of right now, Daughter has to be basically be on a gluten free diet to live. I am still confused and learning how to read labels. I had no idea how much malt is in products-she can't have malt and therefore that led to eliminating all gluten products. She also can't have bell peppers and duck. She was crushed with the peppers bc she ate those like apples. Duck-we never eat, so no big loss there.

1 comment:

  1. Hi Cathie. Just wondering how your daughter is doing since this post. My 12-yr-old son got sick the day after Thanksgiving 2012, missed an entire marking period of school, & was finally diagnosed with multiple food allergies and EE. He can only eat a few things and still has terrible pain every day. Our ped GI doc is sending us to Children's Hospital of Cincinnati to see if there is more we need to do for him since he is not improving much. Coincidentally, my other son has adhd and mild Asperger's. I understand what you are going through! We can only take one day at a time, and don't give up. Good for you being your daughter's advocate. We went through the same thing. The E.R. doc said it was stress and my son said, "I wasn't stressed until I got sick!" So hang in there and good luck with everything. You are a great mom doing a great job under tough circumstances.