Dr. Edmonson called me back quickly and we had a nice long informative discussion. One thing I love about Dr. Edmonson is he never rushed me on the phone - he takes time and answers all of my questions. I really appreciate that because I know he's busy seeing lots of patients during the day.
So, what is Dr. Edmon's take on the allergy results. He said that RAST testing (the blood testing that Allie had with Dr. Thompson) is known to have a 50% accuracy rate. Dr. Edmonson thinks that since Allie is tolerating the eggs and milk just fine now, then it was probably a false positive result. He recommends we keep Allie on the milk and eggs since we are not seeing any reactions to those.
Dr. Edmonson was happy we got a second opinion, however he stated that Dr. Thompson is not a Board Certified Allergist. He said that with Allie's medical complexity, if we want to get another opinion, we need to make sure to see a Board Certified Allergist. Dr. Edmonson made it very clear that Allie should not take the allergy drops which Dr. Thompson is recommending for her. He said that the worst thing you can do for someone with GI issues is give them the actual allergen daily, even if it's in extremely low doses. He said the results of taking the allergy drops would not be good and could actually harm Allie more. So, with that information, we will most definitely be avoiding the allergy drops!
As for the corn, Dr. Edmonson is holding steady on his decision to not re-test her. I asked him again today if he would consider it and he said flat out, "no". He said he's been talking with other allergist and they have seen lately a couple cases come through where the patch testing indicated a severe corn allergy (like Allie's) yet the person was not allergic to corn. Based on this, Dr. Edmonson is suggesting the following:
We do a food trial with corn and see how Allie does with it. While we allow her to eat products with corn, we have to watch her closely for any behavior changes, stool changes, sleeping pattern changes, eating changes, vomiting and basically anything else that could change.
I pointed out to Dr. Edmonson that when Allie was a baby, she was fed infant formula which contains corn and she ate corn products in her daily food until she was 20 months old. She never vomited or had behavior problems until she received her feeding tube. So, my initial thinking is that if Allie is truly allergic to corn, she would have vomited or had behavior problems as an infant & early toddler. Her vomiting and behavior problems didn't arise until after her feeding tube and we were controlling how much food went into her little belly. Maybe her vomiting truly was all due to volume intolerance and her behavior was so awful because she was constantly miserable from throwing up after every feeding. I don't know and nobody else knows either. I know one thing - if we did know, it would make life a whole lot easier.
So, where does this lead me? I have several option that I can think of:
1) Get a 3rd opinion on Allie's allergies
2) In addition to corn, take her off eggs, milk & wheat
3) Dont' change anything and continue to keep her corn free
4) Do a food trial with corn and see how she reacts.
Since getting a second opinion on her allergies has done nothing but make me more confused, I am going to proceed with my gut feeling. My motherly instinct is telling me to do the following:
Do a food trial with corn and see how she reacts. I will keep Allie's blends corn free but let her eat food with corn. I will continue to keep her gluten free because obviously I don't want to change more than one variable at a time. If I see any changes in Allie with being fed corn products, I will stop it immediately and consider the food trial a fail. As for the milk & eggs, I will continue to keep her on those since she shows no signs of an allergy to them. If something changes, of course I will take her off of them.
Again, nothing is for sure but my instinct is telling me this is the best option for now. Assuming Allie eats enough orally, within days we will know if Allie is having any type of reaction to corn.
Here are a couple more pictures from our Florida vacation.....
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| The girls at the park in Florida |
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| My little peanut busting a move |
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| The Berndts at Look Out Mountain (on our way to Florida) |
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| Allie relaxing in Grandpa Ray's chair |
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| So I gained a little weight on vacation - Matt still loves me! |
If Allie does well eating corn products for a couple weeks, you might want to put corn in her blend as her veggie or her grain for a week or so and see what happens. Sometimes there isn't any reaction to small amounts of something but there is to larger amounts. Good luck!
ReplyDeleteI am severely allergic to corn. Blood tests are less than 50% accurate. It could be possible that Allie did not react to the blood allergy test because she has not had any corn in her diet for a while. Would it be possible for you to do the oral challenge in the doctor's office...just in case? From my experience, the more corn I took out of my diet the more sensitive I got.
ReplyDeleteHeidi - good point - Allie doesn't eat much orally so it might not be enough to see a reaction.
ReplyDeleteAnonymous - after speaking to both of her allergist, they both comfirmed it wouldn't be possible that Allie didn't react to the blood test because she has not had corn in her diet. However, I do know the blood test are less than 50% accurate so of course a negative corn test raises question. As far as doing her oral challenge in the doctors office, that isn't really possible because Allie has a delayed reaction. She can eat corn products and not react for 24-48 hours later - she does not have an immediate reaction (like anaphylactic (sp). Her allergy is completely different than that. Her allergy is internal - there is no external evidence of this corn allergy. So, with the delayed reaction, her oral challenge just isn't feasible at the doctors office.
Our allergist recommended we try corn for her and I feel it's safe to try. I would never do this if I thought Allie would have a life threatening reaction or cause her significant pain. I have read a lot about oral trials and I am continuing to watch her closely. I am with Allie 24 hours (I'm a stay at home mom and she is not in school yet) so I will notice any changes with her right away. Of course, if anything arises, I will stop giving her corn products immediately. I appreciate your suggestion about doing the oral challenge in the doctors office but as you can see with Allie's delayed reaction, that is not the best option right now. I will continue to keep Allie's blog updated with her progress.