Dr. Edmonson was shocked when they removed the patch and seen her allergic reaction to corn. The corn sample actually stuck to her back and when he peeled it off, there was an open wound on her back and it started to bleed. Dr. Edmonson said he has only seen two other patients with severe reactions like Allie's. He said that due to the severity of the reaction, this corn allergy could be her underlying issue as to why she doesn't eat. We don't know this for sure but we will be digging deeper to figure out if that is the case.
So, after leaving Dr. Edmonson's office I felt pretty good - we actually didn't get a normal result for something. I figured eliminating corn out of her diet would be a breeze. The first thing I looked up when we got home was what foods we would have to avoid with her new allergy. Well, to my surprise, a lot of foods contain a product of corn, corn syrup, corn starch, etc and etc. Pretty much all processed foods contain a product of corn. I called our new Dietician right away to check into her Boost Kid Essentials milk and Peptamen Jr. milk that she has been on for the past year. Sure enough, both of those milks contain a significant amount of corn. I immediately started to cry......this is what we have been feeding Allie through her tube for the past year and all along she has been allergic to it. No wonder poor Allie hates being tube fed and she puts up such a fight. Every time we feed her, she doesn't feel good. It breaks my heart just thinking about it :-(
I tried contacting Dr. Brown this afternoon to get Allie's final results on her endoscopy and colonoscopy but he wasn't available. His nurse said we would get results on Monday. I was very upset about this because he promised me results before Christmas and he didn't pull through for me. His nurse was very short with me and I was not in the mood to take any one's crap - I was a mom on a mission, unfortunately I still wasn't able to get any results. I did talk to his nurse earlier in the day and she said that some results had come in and preliminarily they all looked "normal". But Dr. Brown still had to look everything over and wait for the final biopsy results. So, Monday it will be - I will be at their office asking for results if I have to!!!
So, what does this all mean???? Basically we are focusing on keeping Allie on her Neocate Junior formula - it's an elemental formula so it's safe in regards to her corn allergy. Matt and I are of course researching which foods she has to avoid and which foods she can eat. We will be focusing on giving her GI track a break and letting it heal. Not sure exactly how much damage has been done to her insides since she has been receiving corn since she was born (infant formula has corn in it). Brings me back to when she was born and I'm thinking this very well could be her ultimate problem. Allie had severe eczema when she was an infant and we were seeing a Dermatologist. After several months of seeing her, he couldn't get her skin to clear up so he referred us to a Pediatric Dermatologist. Well, all of Allie's medical issues were coming to the surface so we never seen the Pediatric Dermatologist but eventually her skin cleared up. Currently today she doesn't have any skin problems. I don't know much about allergies but I'm wondering if maybe her corn allergy started out as a mild allergy causing skin issues but since we kept feeding her corn products, her allergy because severe? I'm not sure if that is even possible but it makes me think anyway.
For now, we will continue to research corn allergies so we can get Allie healthy. I am happy we found something "abnormal" but sad to get the news that her allergy is very severe. Taking corn out of her diet is going to be challenging for us but with time and more research, we will do it. Fortunately, with her not enjoying food, it will give us plenty of time to figure out our new eating lifestyle. As for Allie, eliminating corn from her diet is not going to be her "quick fix". It will take time for her GI track to heal and after that Allie will still need to learn how to eat like a normal toddler. My last conversation with our Speech Therapist (on Wednesday), we both agreed that it is going to take a while and a lot of therapy for Allie to learn how to eat again. So, even though we might have a diagnosis underlying Allie's medical issue - by no means are we even close to have a cured child. Depending on the biopsy results, Allie's recovery will most likely take a very long time. If this even is her underlying issue - so many questions still remain unanswered!
Thank you to everyone that prayed for abnormal results today. Our prayers have been answered. Getting an actual diagnosis about your child is a bit more difficult to digest than I anticipated. I feel bad for her because her diet is going to be a bit difficult to manage (when she starts eating). She won't be able to eat boughten chocolate chip cookies, gummy snacks, pizza, crackers or breakfast cereal and the list goes on and on. I know there are a lot of things she still can eat and they are healthier choices so maybe this won't be too bad. Right now though - it's a bit overwhelming.
Here are a couple pictures of Allie's back. I noticed tonight that one more spot on her back was getting red and puffy so I will be taking a picture of that tomorrow if it's still red. I read online that reactions can happen even after the patch is removed. So, we'll see what tomorrow brings.
Please note that Allie getting this severe corn allergy diagnosis may not be her final diagnosis and it may not be the cause of her refusing to eat orally. This is just one step in the right direction in finding out what is medically wrong with Allie. We still know that she has tolerance and volume issues with her stomach capacity so more research will be done on that when the timing is right. For right now, we will await the biopsy results and focus on keeping Allie corn free.
I hope everyone has a very blessed Christmas. Hard to believe it's Christmas Eve tomorrow!!!!
|Allie's back immediately after rooming the patch - notice only 1 reaction|
|That is her reaction to corn|
|Ouch - they just wiped off the blood and you can see several holes in her skin. Dr. Edmonson couldn't believe Allie wasn't fussy while wearing the patch - he said she must have a VERY high tolerance for pain because this would have been very painful.|
|The girls peaking on the nurse while they are waiting for stickers|
|Daddy & Allie. Allie happy she finally got a bath now that her patch is removed.|