So Aaron had the scopes before Easter, they were bad so was admitted for iv pred(steroid) and to start the new medicine vedolizumab
He got better very fast on iv pred, but dipped a bit energy wise when he came off that. He was pretty unsymptomatic for 2 weeks, but then he had increasing dia and blood so he had to started EEN and settled after a week except then approx every 3 days he had a little dia and maybe some blood, slowly increasing in his typical pattern. We mentioned this to his Dr at infusion #3 and she said we might need to do TPN and we should also give in a stool sample, unfortunately the nurse sent this for the wrong test!
We were relieved a couple days post infusion as his stomach really settled to formed once a day stools.
He finished the steroids this weekend after a delay in reducing these and the plan had been to wean back to solids but he has started dia again. Its hard to know if this is due to a crohns flare up or a positive stool test to adenovirus (he was retested a few weeks after the error)
He's desperate to start eating after the long 6 weeks but is being so patient considering its really hard to explain all this to a 6year old when we don't know what we're doing ourselves!
We are waiting on a plan from our Dr but she is away until next week, he is ok but not as well as he was, despite still being EEN. He has done amazingly well and completed 7 weeks no foods or drinks except formula with no tube either!
He got better very fast on iv pred, but dipped a bit energy wise when he came off that. He was pretty unsymptomatic for 2 weeks, but then he had increasing dia and blood so he had to started EEN and settled after a week except then approx every 3 days he had a little dia and maybe some blood, slowly increasing in his typical pattern. We mentioned this to his Dr at infusion #3 and she said we might need to do TPN and we should also give in a stool sample, unfortunately the nurse sent this for the wrong test!
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| infusion |
He finished the steroids this weekend after a delay in reducing these and the plan had been to wean back to solids but he has started dia again. Its hard to know if this is due to a crohns flare up or a positive stool test to adenovirus (he was retested a few weeks after the error)
He's desperate to start eating after the long 6 weeks but is being so patient considering its really hard to explain all this to a 6year old when we don't know what we're doing ourselves!
We are waiting on a plan from our Dr but she is away until next week, he is ok but not as well as he was, despite still being EEN. He has done amazingly well and completed 7 weeks no foods or drinks except formula with no tube either!
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| frozen formula |
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| smart at a wedding |
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