After Aidan's last stint inpatient at CHOP, and my musings on feedings, I was left feeling like it wasn't Aidan who was failing formulas - it was us failing him. We were feeding him a formula that was wreaking havoc on his little body.
Let's recap:
On Neocate Jr, Aidan did well, right up until January 2013, when we started using the "new label" Neocate Jr. I recognize that the change of labels was not impactful for the vast majority of children, and that it's possible that Aidan's decline and the label change happening in the same timeframe may have been coincidental. During February-March 2013, our lives were fairly miserable. Aidan vomited almost everything he ingested. Things came to a head in April 2013, when he was admitted to CHOP and a GJ tube was placed. At the same time, we discontinued Neocate Jr and started Elecare Jr. (In retrospect, I do not know why we did both of these things at once. I truly don't. But I was desperate to help him.)
Between April 2013 and October 2013, I scrounged up "old label" Neocate Jr from anywhere I could find it. We didn't always have enough to have him exclusively on Neocate Jr, and sometimes had to mix Neocate Jr and Elecare Jr. The last of the "safe" Neocate expired in October 2013, and we moved him to Elecare Jr. in October.
Exclusively on Elecare Jr fed via J tube, Aidan was frequently hospitalized for severe dysmotility, which led to severe constipation and dehydration. These hospitalizations occurred in October 2013, November 2013, December 2013, and February 2013.
By February, I'd had enough. I couldn't keep doing this. I begged our nutritionist to help us. She understood that Aidan's quality of life just had to improve.
Our first thought was to retry Neocate. My hopes weren't super high, but I decided to go into it with an open mind. There aren't many options, so I need to be open to trying everything. We hadn't tried "new" Neocate in a year. It was worth trying again.
Aidan disagreed. What I like about Aidan is that when he fails something, he well and truly fails. He "vomit on the floor in the nutritionist's office" fails. I was cautiously willing to push through, but continued retching and vomiting of bile made it pretty clear that Neocate was going to be a no-go.
So back to PurAmino. We tried PurAmino a year ago too. The results last year were underwhelming, but we were far less desperate at the time. All I really journaled last year was that it made him hyper and extra emotional. We only tried it for about 3 1/2 days, because it was pretty difficult to get samples of.
I'll post more thoughts on PurAmino soon - but after a much longer trial period, and an even longer fight with insurance, we've settled on Puramino as our formula of choice. It does, actually, seem to make him hyper and emotional, but I think that's actually because he's in less pain. He feels better (yay!) so he's more aware of what's going on in his world (yay!) and more easily overwhelmed and overstimulated (boo!).
He has not been hospitalized since we started with PurAmino. We've had one very close call, about a six weeks into our trial. The root of the problem seems to be his poor motility, and when it flares up (somewhere in the neighborhood of every 4-6 weeks), he stops pooping, is in excruciating pain, stops tolerating feeds, and gets dehydrated - all in the span of a day or so. No real warning that this is coming - he's fine one moment and very not fine the next. In the case of this close call, he definitely had a motility flare, but we were able to keep feeds going, so he stayed hydrated, which is the key difference between going to the hospital and staying home.
I think we're going to stick with PurAmino for now. We're essentially out of options otherwise. Wish us luck!
Let's recap:
On Neocate Jr, Aidan did well, right up until January 2013, when we started using the "new label" Neocate Jr. I recognize that the change of labels was not impactful for the vast majority of children, and that it's possible that Aidan's decline and the label change happening in the same timeframe may have been coincidental. During February-March 2013, our lives were fairly miserable. Aidan vomited almost everything he ingested. Things came to a head in April 2013, when he was admitted to CHOP and a GJ tube was placed. At the same time, we discontinued Neocate Jr and started Elecare Jr. (In retrospect, I do not know why we did both of these things at once. I truly don't. But I was desperate to help him.)
Between April 2013 and October 2013, I scrounged up "old label" Neocate Jr from anywhere I could find it. We didn't always have enough to have him exclusively on Neocate Jr, and sometimes had to mix Neocate Jr and Elecare Jr. The last of the "safe" Neocate expired in October 2013, and we moved him to Elecare Jr. in October.
Exclusively on Elecare Jr fed via J tube, Aidan was frequently hospitalized for severe dysmotility, which led to severe constipation and dehydration. These hospitalizations occurred in October 2013, November 2013, December 2013, and February 2013.
By February, I'd had enough. I couldn't keep doing this. I begged our nutritionist to help us. She understood that Aidan's quality of life just had to improve.
Our first thought was to retry Neocate. My hopes weren't super high, but I decided to go into it with an open mind. There aren't many options, so I need to be open to trying everything. We hadn't tried "new" Neocate in a year. It was worth trying again.
Aidan disagreed. What I like about Aidan is that when he fails something, he well and truly fails. He "vomit on the floor in the nutritionist's office" fails. I was cautiously willing to push through, but continued retching and vomiting of bile made it pretty clear that Neocate was going to be a no-go.
So back to PurAmino. We tried PurAmino a year ago too. The results last year were underwhelming, but we were far less desperate at the time. All I really journaled last year was that it made him hyper and extra emotional. We only tried it for about 3 1/2 days, because it was pretty difficult to get samples of.
I'll post more thoughts on PurAmino soon - but after a much longer trial period, and an even longer fight with insurance, we've settled on Puramino as our formula of choice. It does, actually, seem to make him hyper and emotional, but I think that's actually because he's in less pain. He feels better (yay!) so he's more aware of what's going on in his world (yay!) and more easily overwhelmed and overstimulated (boo!).
He has not been hospitalized since we started with PurAmino. We've had one very close call, about a six weeks into our trial. The root of the problem seems to be his poor motility, and when it flares up (somewhere in the neighborhood of every 4-6 weeks), he stops pooping, is in excruciating pain, stops tolerating feeds, and gets dehydrated - all in the span of a day or so. No real warning that this is coming - he's fine one moment and very not fine the next. In the case of this close call, he definitely had a motility flare, but we were able to keep feeds going, so he stayed hydrated, which is the key difference between going to the hospital and staying home.
I think we're going to stick with PurAmino for now. We're essentially out of options otherwise. Wish us luck!
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ReplyDeleteI just found your blog and my heart goes out to you, Aidan and the whole family. I was wondering, since he is on PurAmino, do you mix for 30 cal/oz? My son drinks his but is reaching the age where more calories are needed and I'm wondering what options we have vs. going to the Juniors that I'm petrified of trialing (2 safe foods at 19 months). Thanks for any sharing!
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