Received a call from our nurse this morning at 8:00 stating Allie's disacharides are all normal. Uggg....so now what? Basically all of Allie's results from her endoscopy and colonoscopy came back completely NORMAL! While Dr. Brown performed Allie's endoscopy and colonoscopy, he said that he could see inflammation throughout her whole system, however the biopsy result showed no inflammation. I'm completely confused and not sure what to think about the whole "normal" results. Dr. Edmonson (ENT) said Allie's corn allergy is severe and it's affecting her insides (because she doesn't have any skin issues) but he doesn't know how or what organ(s) it's affecting. I figured the allergy would be affecting her GI track since she doesn't eat orally. However, and this is my own thinking.....if Allie's GI track looks okay and the biopsies came back normal, then this corn allergy cannot be affecting her GI track to severely which in turn very lightly isn't her underlying problem causing her to avoid food. I do not feel in my heart that this corn allergy and gluten sensitivity is the underlying problem for Allie but I don't know. In talking with Dr. Brown and Dr. Edmonson, they said we may never know if these issues are her underlying problem or just a coincidental finding attributing to her refusal of food.
Basically, I feel like we are back at square one - except for the fact that Allie will now be corn and gluten free. I am hoping that once we remove corn and gluten from her diet, she will start feeling better and want to eat. Problem is, right now we dont' know if Allie doesn't feel well - she never complains of pain or discomfort. The only time we know something is wrong is when she vomits but right after vomiting she is back to her normal self. So, I don't even think we are going to see a difference in Allie once she is corn and gluten free, however you never know - I just might be surprised. I hate to be such a pessimist about this but it's just my true feelings and I was seriously hoping for answers with this round of tests. We did get allergy answers but nobody can tell me if this is Allie's true problem or even how this allergy is affecting her little body. This allergy result has just added one more complexity to Allie's eating and lot more hours of daily research for me.
Of course you always have the possibility of getting a false positive allergy test. I talked to Dr. Edmonson about this yesterday and he said that due to the severe reaction that Allie had to the skin test, it most likely was not a false positive results - however he cannot be 100% sure. So, Matt and I were thinking of doing our own little test on her to see if we get the same results. We are thinking of putting corn syrup on a bandage and check it ever 24 hours to see if she is having any type of reaction. Of course I would not leave the bandage on for long because we don't want any type of reaction like she had before - she seriously had two holes burnt into her skin. We have no idea if this would even work but it's something we are thinking about. I'm sure our ENT would think we are crazy and just cringe at our idea but at this point it might just be reality that we are a bit crazy - lol.
The current plan is to remove Allie from all corn and gluten and see our doctors in a month. We are scheduled to meet with Dr. Brown on January 26th and we will meet with Dr. Edmonson around that time also. I'm not sure where to go from here or even what to really think. I guess we are just going to focus on getting Allie corn and gluten free and hopefully we will see some type of "sign" that her insides are healing and she is feeling better. I have many new questions for our doctors so I will start compiling them so I am completely prepared for January 26th. One of my big questions is in regards to Allie's IgG and IgA results. They were both high so Dr. Brown is assuming she is gluten sensitive, however I am wondering if these two indicators could mean something else is going on - or do they always represent a gluten issue? Her B12 was high also, however Dr. Brown said he wasn't concerned about that. When researching on-line about high B12, it talks about kidney function, etc. I'm just beginning to wonder if it's worth looking into since Allie is such a "mystery" to the doctors.
Overall Allie is doing pretty well. She is still vomiting on the new Neocate formula though. Today she vomited 2 of her 4 feedings. Her vomiting episodes are random and not everyday so it's nothing too unmanageable - but just enough vomiting to not feel comfortable to feed her in public. You just never know when the vomit is going to strike so we prefer to stick around home around her feeding times. Her night time feeds are going great. She is handling them very well and she is adjusting to being hooked back up at night. Her daytime bolus feeds are also going well. She doesn't fight the bolus feeds nearly as hard as the pump and backpack so that has been a huge relief for us. She still doesn't like getting bolus feeds but she feels like she has more control because she gets to pick where (in the house) she wants her feedings. Most of the time she picks her bed - no complaining there because it's a comfortable seat for both of us.
In case you forgot what we looked like (haha), here is our little family of 4.