Need advice, feeling frustrated/concerned

[Anonymous]

Hi All,

I just posted a question about Prevacid side effects in the medicines section, but i was just hoping for some input here. Our Pedi GI visit last week was nothing earth-shattering. The Pedi GI said that she didnt think marci-kids had done any research, but was just giving high doses of PPIs to infants. She also didnt want to up Harrison’s prevacid dose (he’s on 7.5mg in the am and 15mg in the evening), but she added Carafate 2x/day. That actually seemed to help a bit, but there is still room for improvement during the day. Harry’s nights are great now (not to jinx us or anything…), but during hte day the only way for him to sleep is if we time a car ride right just after a bottle, or for me to rock him a lot and then hold him while he sleeps. He’s still arching and moving a bit, and now and then doing that thing where it looks like they’re choking and opening his mouth. He also still stiffens up a lot, my sister picked him up and mentioned it without me having to say anything, then also noticed just how unsettled/uncomfy he was, again without me having to say anything. (I try not to say much about it to anyone, I don’t want to seem like I’m making it more than it is or trying to talk anyone into seeing anything, but anyone who’s spent time with him can tell there’s still something not right–my inlaws have watched him a couple of times and noticed he still wasn’t right)

We went to the Pediatrician today, and he’d like us to try reversing the doses (15 in am, 7.5 in pm) and see what happens. If his nights are still good and his days improve, then leave the adjusted doses as is, but if his nights are worse and his days are good, then move him to 15 in am & 15 in pm. My dh was a bit annoyed with me that I would do that, but I can’t just up his dose without at least trying this–I really dont want him to regress, but I don’t want to pump meds into him that he doesn’t need either! I also mentioned to the Pedi that I had made an appointment for a 2nd opinion with another Pedi GI (at Johns Hopkins), and our Pedi thought that wasn’t a bad idea. That Pedi GI visit is on Thursday.

Are we expecting too much? Dagney had basically full relief on Neocate and 30mg Prevacid (except for the major painless spitting up until 9ish months and a period around 6months where she had break-through pain & was on Carafate for a short time). Harry is still unsettled often during the day as I said. He’s already making more noise than normaly (throat clearning, lots of phlegm sounds) at this point of the night–he had the 7.5mg dose tonight, but since we had also given him 7.5mg this morning, he’s only had 15mg total today instead of the usual 22.5mg. He’s also on 1ml Carafate 2x/day.

Any input would be appreciated!!

dfb052009-10-12 21:53:55

[Anonymous]

I feel your pain. It was also hard for Hailey to get relief. Is it possible that he has damage? When we couldn’t figure things out, that was when we went the route of tests.

About marci-kids, I replied to your other thread. I think that sometimes their recommendations definitely feel like a leap of faith. For me that leap was easier because we had reached rock bottom, and also because we joined when Joel was still around. He reached out to us when I really needed it. BUT, I still wrote them a whole bunch of questions which you can find under patient stories on their website. But, they did do research, and I believe probably still are, though I’m not sure on what. Here’s a link:

http://www.marci-kids.com/dosingppis.html

Good luck. Sometimes these decisions are so hard and you have to go with your gut. HUGS.

[Anonymous]

Thanks, Lori. I’m still wavering on what we should do. We did the reversal of doses last night & this am, and it hasn’t been great thus far. His night was not good and his day is like all the others so far. I know it’s only day 1, but I’m not willing to jeopardize those great nights he’s been having. I called the GI to explain the situation, talked to the nurse, and she said to up him to 15mg 2x/day. I actually cried on the phone with her (not sure if she could tell) I was so relieved. Then she called back within 10 minutes to say no, she double checked w/ the doc and she doesnt want to up the dose. She was thinking in kilos rather than pounds (he’s 13lb 9oz). SO, she said they could add another dose of Carafate or add Axid. I chose to add Axid, it’s better than nothing. I wouldnt do it today, as I’m still testing out the dose reversal, but I’m also still on the fence about just going with what the Pediatrician said (go to 15mg 2/day–and I’d assume no Axid then with that…) after this little trial. I’m not sure why I’m having such a hard time with it this time, I guess last time no one had mentioned potential neuro issues, so now I’m stuck on that. I may call the Pediatrician tomorrow to discuss it. I just wish someone would tell me to do it and it’ll be ok and be done with it!! 🙂

[Anonymous]

If it helps, I haven’t ready anything whatsoever about possible neuro issues. Whenever I had questions about something that a doc said to me related to meds, I actually emailed it to Dr. Phillips. He was always good about summarizing what the data actually said, and then sending a link from the actual article that cited the concern. I found it helped me to make decisions about the medications. You might want to email and ask him so that maybe you can put the worry to rest. The thing I found with reflux was that there were lots of people telling you the wrong thing to do, and few people that knew the right thing. This leaves us to figure out what’s right and what’s wrong, to try to problem solve and suggest things on our own. It can be exhausting, but you will figure it out for Harrison. I swear that I NEVER thought we’d come out on the other side with Hailey. I really mean that. When things were at their worst, I didn’t think that we’d ever find the answer or that it would ever end. I’m not sure about the answers part, but I’m grateful that it passed. Hang in there. I remember how tough it is.

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