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So most of you know that Tanner had his endoscopy/colonostopy on Friday. I talked with the Dr. today and his eosinophil counts are higher than they have ever been. He had 15 in the upper part of his esophagus and 86 in the lower part. The esophagus should have 0 eosinophils but anything 0-15 in considered normal. His colon was clean. We are basically at square one and any progress we had made is gone. Right now we have 3 options:
we can try to get into the budesonide study again. Budesonide is actually the same thing as pulmacort (used for asthma). They have made it suspension form and the idea is when swallowed it coats the esophagus and kills the eosinophils. They pros are Tanner would get to keep all of the foods that he is on and all medical tests and visits and the medication would be paid for. The cons are it is a study and the long-term effects are unknown and he could end up on a placebo. However if we do not see a change or he gets worse we can take him out of the study. My theory is he has been going like this for a year now. I don’t think that a month of two is going to make things worse.
We can do swallowed Flovent. Flovent also an asthma medication which is an inhaler. He would swallow instead of inhale the medication. With this we would still have to find the food that is causing this and take it out of his diet. Which sounds much easier than it is. And the medication would be somewhat costly.
We could take all his food away and go formula only. This would probably be my last choice because it would be devastating and he would probably end up on a feeding tube. However it would give him a chance to heal and then we could start food trials and find a truly “good” diet. This would probably still require flovent to help because diet change takes time to work.
I am torn between option one and two. I just don’t know what we are going to do right now. I will update you all when we have made a decision. Tanner has and appointment with the GI on Monday and the allergist for testing on Thurs. I should have the answers by then. Keep Tanner in your prayers
we can try to get into the budesonide study again. Budesonide is actually the same thing as pulmacort (used for asthma). They have made it suspension form and the idea is when swallowed it coats the esophagus and kills the eosinophils. They pros are Tanner would get to keep all of the foods that he is on and all medical tests and visits and the medication would be paid for. The cons are it is a study and the long-term effects are unknown and he could end up on a placebo. However if we do not see a change or he gets worse we can take him out of the study. My theory is he has been going like this for a year now. I don’t think that a month of two is going to make things worse.
We can do swallowed Flovent. Flovent also an asthma medication which is an inhaler. He would swallow instead of inhale the medication. With this we would still have to find the food that is causing this and take it out of his diet. Which sounds much easier than it is. And the medication would be somewhat costly.
We could take all his food away and go formula only. This would probably be my last choice because it would be devastating and he would probably end up on a feeding tube. However it would give him a chance to heal and then we could start food trials and find a truly “good” diet. This would probably still require flovent to help because diet change takes time to work.
I am torn between option one and two. I just don’t know what we are going to do right now. I will update you all when we have made a decision. Tanner has and appointment with the GI on Monday and the allergist for testing on Thurs. I should have the answers by then. Keep Tanner in your prayers
I really like that you keep this blog updated Jenn, I've read everything you've written and I think its great that you keep us all up to date.
ReplyDeleteAshley
Liam hasn't been on swallowed flovent since he was about 2 years old. I think that may be a good idea to talk to GI about...
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