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 symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Sunday, December 15, 2013
Tuesday, February 19, 2013
A Long Overdue Update
Oliver has been corn-free for nearly ten months now. All the things I mentioned previously (sleeping better and eating better) are still happening, so although it's hard I am happy to have him off of corn! He has done really well with it, overall. We went all out and pulled all corn syrup and corn derivatives. Those things don't typically cause EoE reactions (because they supposedly have no proteins), yet it's not unheard of for a kid to not be able to tolerate them. We have kept dum-dums lollipops in his diet. They do have corn syrup, but are safe for a vast majority of EoE kids, even those with no other safe foods.
With regards to corn syrup, we had often wondered if he was reacting to ketchup. It's very likely seeing as every ketchup you'll ever find at a restaurant has corn syrup. Or it could have been the hot dog he always ate with the ketchup, who knows. But as we struggled to find a ketchup that would work (Hunt's unfortuntaly doesn't sell theirs anymore, but Kroger and Albertson's both have an organic store brand one), I recalled those times when I was wondering if the ketchup he was eating was making him sick.
From that point, we did something we maybe shouldn't have. We added a new food AND removed one food without checking things out via endoscopy in between. This means that should his next endoscopy show eosinophils, we won't know if the soy is a no go or perhaps the soy is safe and there is something else that he was eating all along that was the problem. Had we done the endoscopy after just removing corn, we would have known if he was "clear". Instead, we didn't go that route and just assumed that removing corn was going to give him clear (no eosinophils) biopsies from the endoscopy. Honestly, I thought that soy was going to be a huge fail and we'd no right away that it wasn't going to work, which was the main reason I agreed to the soy trial (it's what the doctors thought should be the next step). But, that didn't happen. He's been doing very well with the soy, actually. That doesn't mean things still don't look bad inside though! There's also the question of if he even knows what it's like to eat without pain, or if he's so used to stomach pain that it doesn't bother him anymore. Perhaps if you or I were feeling how he was we'd be visibly irritable to all around us, but Oliver may just be so used to it that it doesn't phase him. Who knows. Even if he is experiencing no pain, the eosinophils could still be wrecking havoc on his esophagus.
We will definitely be doing another endoscopy very soon. It's time to add another food, but we need to know for sure that it's okay to do so.
With regards to corn syrup, we had often wondered if he was reacting to ketchup. It's very likely seeing as every ketchup you'll ever find at a restaurant has corn syrup. Or it could have been the hot dog he always ate with the ketchup, who knows. But as we struggled to find a ketchup that would work (Hunt's unfortuntaly doesn't sell theirs anymore, but Kroger and Albertson's both have an organic store brand one), I recalled those times when I was wondering if the ketchup he was eating was making him sick.
From that point, we did something we maybe shouldn't have. We added a new food AND removed one food without checking things out via endoscopy in between. This means that should his next endoscopy show eosinophils, we won't know if the soy is a no go or perhaps the soy is safe and there is something else that he was eating all along that was the problem. Had we done the endoscopy after just removing corn, we would have known if he was "clear". Instead, we didn't go that route and just assumed that removing corn was going to give him clear (no eosinophils) biopsies from the endoscopy. Honestly, I thought that soy was going to be a huge fail and we'd no right away that it wasn't going to work, which was the main reason I agreed to the soy trial (it's what the doctors thought should be the next step). But, that didn't happen. He's been doing very well with the soy, actually. That doesn't mean things still don't look bad inside though! There's also the question of if he even knows what it's like to eat without pain, or if he's so used to stomach pain that it doesn't bother him anymore. Perhaps if you or I were feeling how he was we'd be visibly irritable to all around us, but Oliver may just be so used to it that it doesn't phase him. Who knows. Even if he is experiencing no pain, the eosinophils could still be wrecking havoc on his esophagus.
We will definitely be doing another endoscopy very soon. It's time to add another food, but we need to know for sure that it's okay to do so.
Wednesday, June 30, 2010
Things That All Make Sense Now
EoE symptoms seem to vary from person to person. Young children often experience nausea and vomiting, failure to thrive, feeding refusal/intolerance or poor appetite, and difficulty sleeping. Older children and adults tend to experience dysphagia (difficulty swallowing) and food impaction (food gets stuck in the esophagus). Reading lists of symptoms and reading what others have experienced with their children is making it all click inside my head.
I've nursed Oliver and have always thought he's had latching issues. He also would eat quickly and fairly frequently, which seemed odd (in comparison to my other two children). I didn't worry too much because this was back when he was actually gaining weight! By about six months old he either got the hang of it, or I got so used to it that I didn't notice it so much. At this point, though, he started vomiting (this probably is due to us introducing solid foods to him). Not throwing up, but actual vomiting. He would throw up on average once a week. It would come and go so that once I was worried about it, he would stop for awhile.
He was not a very good napper when he was little. He wanted to be held and would only sleep for short spurts. It's a lot like my oldest son, so I wasn't too alarmed. However, I did not know how to put him to sleep. He wouldn't nurse to sleep, he wouldn't rock to sleep, nothing worked. This bothered me a lot. He would wake up screaming in the night and I could do nothing to soothe him back to sleep. In retrospect, I'm sure his stomach was hurting him and there really was nothing we could do.
I've nursed Oliver and have always thought he's had latching issues. He also would eat quickly and fairly frequently, which seemed odd (in comparison to my other two children). I didn't worry too much because this was back when he was actually gaining weight! By about six months old he either got the hang of it, or I got so used to it that I didn't notice it so much. At this point, though, he started vomiting (this probably is due to us introducing solid foods to him). Not throwing up, but actual vomiting. He would throw up on average once a week. It would come and go so that once I was worried about it, he would stop for awhile.
He was not a very good napper when he was little. He wanted to be held and would only sleep for short spurts. It's a lot like my oldest son, so I wasn't too alarmed. However, I did not know how to put him to sleep. He wouldn't nurse to sleep, he wouldn't rock to sleep, nothing worked. This bothered me a lot. He would wake up screaming in the night and I could do nothing to soothe him back to sleep. In retrospect, I'm sure his stomach was hurting him and there really was nothing we could do.
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