Suzanne just called to say that Riley's stool sample came back positive for protein-losing enteropathy (PLE). We're going to talk to Dr. Tarnoff together this afternoon when I get back to the hospital to try and learn more. The doctor who spoke to Suzanne indicated that the test may not be completely definitive due to Riley's sickness, and a follow-on stool test will need to be performed later to say conclusively that Riley has PLE. Treatment for PLE is complicated and in Riley's case probably means a fenestration (performed surgically). Riley has shown classic symptoms of PLE - complaints of stomach discomfort, pleural effusions and general puffiness.
We'll post later this afternoon after we've had a chance to consult with Dr. Tarnoff.
Wednesday, March 07, 2007
Positive for PLE
Posted by Ken Norton at 3/07/2007 12:35:00 PM
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11 comments:
We have been following Riley's progress and are sad to hear that he is back in the hospital. We hope that a course of action happens soon and Riley is on the mend and back to his happy self. Jillian will be at UCSF in the next month or two for a heart cath. - we certainly hope that Riley is long gone and home with his family by then.
Russ and Dina Sommers
I am sorry that Riley likely has PLE. From reading the article I see that there is no single course of treatment and that fenestration likely means surgery.
I feel really heartsore for your little guy. I hope he responds well to treatment - no wonder he hasn't been eating / feelling well.
I'm sorry to hear about the PLE. But at least you have an answer now and can start taking steps to make Riley well again. We're thinking of you guys.
Thanks to the both of you for keeping us posted. I know it can't be easy. I hope that the PLE diagnosis ends up being a false positive when the next test results are in. But either way, I pray he's on to the next "fix" and a speedy recovery following. Please forward our phone or email on to anyone who's coordinating meals or help for you guys. And the offer continues for help with Carter or anything under the sun that can make this time a little easier/better for all of you. -Jayne
I'm so sorry to hear about the PLE diagnosis. From what I've read, fenestration seems to be a good option for resolving both the PLE and the effusions, though the prospect of yet another surgery is daunting - is there any way it can be done in the cath lab so it's not as invasive?
If I recall correctly, Riley never had a fenestration, so this might be just what he needs. According to this link some hospitals always perform fenestration during the initial operation, since it seems to have a better outcome despite the decreased oxygen levels.
That, to me, is an indication that fenestration is something they should definitely try now, especially given Riley's effusions and PLE diagnosis. Saturation levels will go down, but if it can correct the fluid and (presumed) PLE, then I think they have to do it.
I feel for you guys, facing yet another surgery. You are continuously in my thoughts and prayers. I told my daughter Caitlin that Riley was not feeling well, and her class said a group prayer for him. We'd all hoped that that the surgeries were over with, at least for a few years, but if fenestration is what it will take to make him feel better, then we're all hoping for an uncomplicated surgery and a quick recovery.
We are glad to hear that we may finally have some answers for Riley's ailments since the fall. Although, the thought of surgery is scary, we are glad to know that the PLE can be eliminated. We love you very much and pray for wisdom, understanding, rest and Riley's health. Love, Auntie and Stephen
We are anxiously awaiting news about your meeting with Dr. Tarnoff. PLE sure helps explain a lot of Riley's symptoms and hopefully there is a plan of action. You remain in our thoughts and prayers 24/7. We love you and miss you so much. Love, Grammy and Wayne
As answers come to light, so does some sort of relief I am sure, as well as concern of what is to come.
Glad to hear fevers have subsided.
Monday and Tues Cath and MRI seem so far away i'm sure.
I'm curious to see what is to come of his "leaky valve" (am i correct in assuming its Riley's Mitral valve?).
Obviously Tarnoff has looked at his cardiac echo from before, but the cath and MRI will give a better picture of what is the best overall treatment.
I can't say anything other than we're thinking of you and every ounce of our being is hoping for a speedy and successful outcome to surgery if it has to happen. As ever, if you need anything I can be in SF in half an hour and I can pick Carter up at anytime.
Love as ever
Jude et al
My heart goes out to you guys........I wish I knew something to say that would be more helpful. Just know that my whole family (my parents included) keep you in our thoughts constantly. I pray that the PLE diagnosis is false. When will they take another sample?
I hope that you are all able to get some rest. I know you will stay strong.....you're an amazing family! I know what you're going through and it's just plain rotten and unfair. Please give Riley a huge hug and know that we're all pulling for him.
Gwynne
Was trying to look up PLE and came across your blog. Pictures of his Fontan made me cry, I guess cause he has hair just like my sons and I am dreading the Fontan (supposedly sometime this summer).
Thanks for the pics!
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