When Oliver was first diagnosed, I found several blogs written by parents of EoE kids. I remember being very frustrated by the fact that most of them were not updated very frequently! I've since learned that with many (most?) patients, things just don't change very often. Once we got Oliver pretty well managed, there just really wasn't much to report on. That said, I have been a bit of a procrastinator when it comes to updating, and there is a few things to mention from the past 10 months.
Oliver had his fourth endoscopy in April. It looked great. We got the best visuals we've ever had and the biopsies looked good and were eosinophil free. This meant that soy, which he had been consuming for the past six months could now be considered a safe food. Because of this added nutrition to his diet, we started to wean him from the EleCare. I say wean, because he was very attached to drinking it! We could have pulled it cold turkey, but that would have been hard for us all and we had a few more cans to use up. I kept giving it to him while he was trialing the soy just in case soy failed and we needed to keep it in his diet to fill in any gaps.
We did blood testing and skin prick testing with the allergist and got the okay to trial chicken, peanuts, and almonds. I was hoping for beans and Oliver was hoping for oats, but neither one of those got the allergist's okay because he was showing up positive for them on the traditional allergy tests and there is no use trying a food that might give him a "typical" allergic reaction (for more on the difference between EoE and IgE allergies, see this post). I wanted almonds because I wanted him to have another milk source, and peanuts were all clear so we added that to the list.
We started with chicken, and though we had no very obvious symptoms he started constantly asking for food. He was eating non-stop and I *think* he was again confusing pain for hunger, and it's also possible that eating would temporarily soothe the pain (I've heard from adult/older kid patients that that happens). We pulled chicken and that seemed to stop. I am now afraid to do another trial because it's just so hard to know what foods are pass and fail sometimes! If we try all three, and we get a bad endoscopy, we have to assume all three are not safe because we really don't know which one or two it could be. On the flip side, if all looks good then all three foods become safe and we added three foods with one endoscopy which is quite efficient!
We have since moved to a new state and have yet to set Oliver up with new doctors, so we really don't have a plan for the time being.
Until next time...
Showing posts with label Food Allergy. Show all posts
Showing posts with label Food Allergy. Show all posts
Sunday, December 15, 2013
Wednesday, April 25, 2012
Endoscopy Results, Allergy Visit, and No More Corn
The post title pretty much says it all, but if you want some more details, read on..
Oliver had biopsies with 20+ eosinophils in them (others had just a few). 20+ is high enough to diagnose, so that's not really a good thing. However, the gastroenterologist was not concerned about this, because he saw it as an improvement (an improvement over his initial endoscopy, but not over his second one, I should have called him on that, but I didn't). Jordan and I aren't satisfied with these results, and crossed fingers and toes that the allergist (whom we had an appointment with just days after we received the results) wouldn't be satisfied either.
Our allergist seems to know his stuff, but he's very much a man of few words. He looked over the results and then suggested skin prick tests. The skin tests showed a positive reaction to corn. So we pulled corn from his diet. This has proved to be a tricky one because it involves removing foods that have always been safe for him, but he's doing quite well with it. Probably because he's still very much in a "out of sight, out of mind" stage, so if we don't have it (or it is hidden out of view), he does very well when I say "we don't have any of that". I have explained to him that he can't have corn anymore, but he just started telling me that things don't have corn in them, so I've found telling him we don't have something (and tossing a few things so that can be true) works best.
Almost immediately he started sleeping better. It seemed too quick to be linked, but it's hard to know for sure. He's been sleeping very poorly for the past two months or so, and it was so nice to be able to go the entire night without him waking up and crying! After a few days, his appetite also improved. He's been consistently eating well for the past five days or so. Though his weight gain has been okay, I've still been very worried about his lack of eating (and drinking his formula) over the past very long time, so it's nice to seem him eating! Again, pretty quick changes, so it's hard to know if it's connected to the corn removal or just a fluke.
We'll follow up with his allergist in six weeks and go from there.
Oliver had biopsies with 20+ eosinophils in them (others had just a few). 20+ is high enough to diagnose, so that's not really a good thing. However, the gastroenterologist was not concerned about this, because he saw it as an improvement (an improvement over his initial endoscopy, but not over his second one, I should have called him on that, but I didn't). Jordan and I aren't satisfied with these results, and crossed fingers and toes that the allergist (whom we had an appointment with just days after we received the results) wouldn't be satisfied either.
Our allergist seems to know his stuff, but he's very much a man of few words. He looked over the results and then suggested skin prick tests. The skin tests showed a positive reaction to corn. So we pulled corn from his diet. This has proved to be a tricky one because it involves removing foods that have always been safe for him, but he's doing quite well with it. Probably because he's still very much in a "out of sight, out of mind" stage, so if we don't have it (or it is hidden out of view), he does very well when I say "we don't have any of that". I have explained to him that he can't have corn anymore, but he just started telling me that things don't have corn in them, so I've found telling him we don't have something (and tossing a few things so that can be true) works best.
Almost immediately he started sleeping better. It seemed too quick to be linked, but it's hard to know for sure. He's been sleeping very poorly for the past two months or so, and it was so nice to be able to go the entire night without him waking up and crying! After a few days, his appetite also improved. He's been consistently eating well for the past five days or so. Though his weight gain has been okay, I've still been very worried about his lack of eating (and drinking his formula) over the past very long time, so it's nice to seem him eating! Again, pretty quick changes, so it's hard to know if it's connected to the corn removal or just a fluke.
We'll follow up with his allergist in six weeks and go from there.
Thursday, November 11, 2010
Will He Grow Out Of It?
"Will he grow out of it?" is a question I get a lot. The short answer is no. The long answer is, well, read on.
It's fairly common knowledge that children often grow out of food allergies. Eosinophilic Esophagitis isn't a typical food allergy. Chances are that Oliver has "normal" IgE mediated food allergies* that don't affect his EoE and others that do. For example, blood tests have told us that Oliver has an awful lot of IgE antibodies when milk is introduced to his system. This very likely means that he has an IgE mediated allergy (I say very likely since these blood tests aren't always accurate, especially for young children). Since drinking milk (or even just touching milk) gives him an eczema rash, we tend to think that's a true allergy for him. But, milk may not trigger his EoE. If it turns out that it doesn't trigger the EoE, he could very well grow out of the allergy. If it does trigger the EoE, he will always need to avoid milk.
How do we know what triggers the EoE? First we have to get to a point where we've eliminated everything that might possibly cause a reaction. Hopefully he will have another endoscopy before the end of the year. Either it will be clear (meaning no eosinophils) or not clear. If it doesn't come back clear, then we need to eliminate more foods (while still keeping him off of the ones he's already off). If it comes back clear we know we've eliminated the offending foods and we can start to add some back because may have also eliminated foods that really aren't triggering his EoE. If we are able to add a food back with no reaction from him (we'd probably need another endoscopy to know for sure), then that food can go on his okay list.
Basically it's a long game of trial and error.
Clear as mud, right?
*IgE antibodies are produced when immune cells encounter the food, the antibodies see the food as an invader and trigger an allergic response. This itself has nothing to do with EoE other than the fact that many patients have IgE allergies along with their EoE and testing for IgE allergies can be a good (and much less invasive!) way to guess what EoE triggers might be. For some people, their IgE allergies ARE their EoE triggers straight across the board, but I don't believe that is very common. (last paragraph updated 12-13)
It's fairly common knowledge that children often grow out of food allergies. Eosinophilic Esophagitis isn't a typical food allergy. Chances are that Oliver has "normal" IgE mediated food allergies* that don't affect his EoE and others that do. For example, blood tests have told us that Oliver has an awful lot of IgE antibodies when milk is introduced to his system. This very likely means that he has an IgE mediated allergy (I say very likely since these blood tests aren't always accurate, especially for young children). Since drinking milk (or even just touching milk) gives him an eczema rash, we tend to think that's a true allergy for him. But, milk may not trigger his EoE. If it turns out that it doesn't trigger the EoE, he could very well grow out of the allergy. If it does trigger the EoE, he will always need to avoid milk.
How do we know what triggers the EoE? First we have to get to a point where we've eliminated everything that might possibly cause a reaction. Hopefully he will have another endoscopy before the end of the year. Either it will be clear (meaning no eosinophils) or not clear. If it doesn't come back clear, then we need to eliminate more foods (while still keeping him off of the ones he's already off). If it comes back clear we know we've eliminated the offending foods and we can start to add some back because may have also eliminated foods that really aren't triggering his EoE. If we are able to add a food back with no reaction from him (we'd probably need another endoscopy to know for sure), then that food can go on his okay list.
Basically it's a long game of trial and error.
Clear as mud, right?
*IgE antibodies are produced when immune cells encounter the food, the antibodies see the food as an invader and trigger an allergic response. This itself has nothing to do with EoE other than the fact that many patients have IgE allergies along with their EoE and testing for IgE allergies can be a good (and much less invasive!) way to guess what EoE triggers might be. For some people, their IgE allergies ARE their EoE triggers straight across the board, but I don't believe that is very common. (last paragraph updated 12-13)
Tuesday, November 2, 2010
The Mother of All Food Allergies
EoE has been called by some the Mother of All Food Allergies but it is so different from "normal" food allergies. The mechanisms which cause negative effects which we normally associate with allergies are different for EoE than they are for EoE. What does this mean?
Up until now, our allergist has only performed RAST (blood IgE) tests to determine to which foods Oliver has a sensitivity. The RAST test is moderately effective in determining which foods may cause a typical reaction in patients with normal food allergies. These tests tend to deliver false positives and can be followed up by food trials to determine clinical results. The RAST test generally is not used to determine foods which trigger EoE reactions because it delivers too many false negatives. Skin Testing and Patch testing have proven more effective for determining offending foods for EoE.
So, for now we follow the diet proscribed by the RAST tests and Oliver doesn't eat any milk, wheat, soy, egg, chicken, peanut, or black beans - or products with any of those ingredients. Hopefully after a follow-up endoscopy we'll know whether we have eliminated enough.
- A clean endoscopy would mean we have eliminated all the offending foods. We would be able to then trial some of the foods we have removed to find out if he really can tolerate them or not.
- Poor results will mean we have to identify some other foods that may be causing problems. This doesn't mean that the ones we have removed are offenders - some of them may not be but we can't really try adding any foods back in until we have a symptom free esophagus to work with. -- Unfortunately this is what I fear will happen and it will be even longer until we can determine of what Oliver's diet will consist.
Next time we see the allergist I'm going to ask him about patch testing. At the very least I think it will be necessary if his follow-up endoscopy (to be performed at an undetermined future date) has negative results.
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