How long would you give it??

[Anonymous]

Hi All,

We started Harrison on the Neocate last Tuesday–actually we started him on the Nutramigen AA on Tuesday (samples from the doc) and then the Neocate came in (thankfully covered again by insurance!) and we started that on Sunday once the Nutgramigen was gone. Harry was great the first couple of days, but is still VERy frequently clearing his throat–not once or twice but it will go on for many minutes and will start up in the middle of the night out of nowhere, and he’ll always do it when we put him down at night(we have him in a bassinet with the head lifted). He also snores often and still moves/arches a bit when eating. He seemed to spit up acid yesterday (it was clear) and had a big spit up (on him and me!) this morning–but then finally seemed to calm down a bit. He’s very restless in the mornings and only takes little cat naps here and there, but is nearly impossible to comfort or calm down. He’ll finally fall asleep after crying and then once I put him down, he’ll wake up again or move around/clear his throat till he wakes himself up again. Most afternoons (around now–1ish to 3/4ish) he’ll sleep well, but then is a bit cranky again in the evenings and does fairly well at nights. He still wakes up usually 12ish/4ish, but is fairly easy to get back down after each waking. There are moments when he’s not crying and is awake, but for the most part, he’s not very happy and is generally either sleeping or crying most of the time. Dagney was a very happy baby, but her reflux/mspi showed up much later than Harry’s has, and you can tell that he’s just not having a great time!

My question is, how long would you really give the Neocate before calling the doc again about possibly upping the Prevacid dose? I checked Marci-kids and it looks like we could go up to 22.5mg/day on his dose, we’re at 15mg right now. I don’t want to jump the gun or up his dose if it’s not necessary, but i also don’t want him to be in pain if we can avoid it. I know not all babies are as smiley and happy as Dagney was, but I don’t want him to be unhappy and uncomfy all the time either if we can help him. We’ve tried Mylanta here and there and it seemed to help a little–what little he was able to keep in his mouth & swollow!

Thanks!

[Anonymous]

I know this isn’t the answer you are probably hoping for, but I “think” you should wait a minimum of 2wks and possibly as long as 4wks to let the Neocate work on healing things. Maybe someone else will have a “better” answer! good luck.. hang in there you are doing the best you can and that is a great job!

[Anonymous]

Thanks, Beth! I was hoping for a different answer, but i figured it would be 2 weeks at least. He’s doing a bit better, so we’re happy with that much!

[hellbennt]

2 weeks seems to be the ‘rule’…

are you babywearing?

[Anonymous]

I just tried it today, and i liked it! I have a Snuggly carrier, which i didn’t like at first, but i adjusted it a bit, and now it was kind of neat. He seemed to like it too, and fell asleep! I’ll be doing more of that from now on!

[Anonymous]

hey denise ..glad to hear you got the insurance to cover the neocate!

and i would say atleast 2 weeks as well..

and i think 15 mg’s should be good for him right now.. he is only a month old right??

[Anonymous]

Hi all,

I’ve been meaning to post for a while, but things have been so busy & my computer here isnt so great, i’ve been doing all my facebook from my phone, but this would be too hard to do from there! Anyway, we gave the meds & formula a few more weeks, & Harrison was still having some reflux issues, so with the pedi’s ok,we upped the prevacid to22.5 mg/day a few days ago,& it seems to have helped. He still has some reflux issues (moving/arching a bit), but he seems a lot happier now. He’s still super gassy, and I’m going to see if there are any better bottles out there, i’ll post a question about that in another forum though.

Thanks for all your input!

[Anonymous]

SO…I spoke too fast. Things have gone downhill once again. It looks like we had that “honeymoon period” when we first upped him to 22.5 mg, but other than a couple of days there, he’s now just as bad as before. My dh & I are exhausted, frustrated, upset…you name it. Our little guy thrashes around all the time, has terrible gas (both in amount & smell), does not sleep during the day other than maybe 2 20-30 minute spells, then at night he’ll sleep about 9ish hours broken up by 1-2 wakings. That’s it for the day. He’s exhausted and frantic to sleep, to burp, to have a bm, and none of that is coming easy for the little guy. He may fall asleep in my arms while eating, but if I try to put him down, usually he’ll start thrashing around and wake up quickly. If he manages to stay asleep, it’s not for more than 20-30 minutes only maybe 2 times/day. He’s unsettled all day long, and just not happy. I feel so bad for him and for my dd, and I feel like I can’t give either one of them the attention they need. The poor little guy had blood in his stool at 2 weeks (he had been on Nutramigen at that point since he was 4 days old), and we’re in the middle of a 2nd stool test that we need to return to the lab on Monday. When my pedi approved putting him up to 22.5mg he said if that didn’t do it for him, he’d call the GI to get Harrison into them faster (he’s supposed to go in on Oct 5th). He’s also much worse than Dagney was at this age. Actually, at 8 1/2 weeks, this is similar to how Dagney was, except she was still unmedicated & on Nutramigen. He’s acting this way on 22.5mg Prevacid & Neocate, which makes us nervous as to how bad he has it, and if something else could also be wrong.

Thanks all for listening, and sorry for rambling…I’ll keep you posted on what happens next.

[hellbennt]

oh, Denise!!

Next I would say to try probioitcs…this helped w/ erintx’s lo…

he was breastmilk, w/ Erin on a very limited diet, so like Neocate…

she gave probiotics, too…her ds also had terrible gas, strained to poop, couldn’t sleep, etc..

also in her post she tells how you can test the stool at home if you want/need…

sorry that the links are copying weird!! I can’t figure out why when I copy from a Word document onto this site (now using Mozilla) it gets all wonky

Erin’s sticky: https://www.infantreflux.org/forum/forum_posts.asp?TID=12948&PID=105126#105126

More erin; https://www.infantreflux.org/forum/forum_posts.asp?TID=13175&PID=106395#106395

Wow! it copied correctly. weird.

hellbennt2009-09-20 09:38:50

[Anonymous]

Laura, thank you so much for your input. I’ve checked out those links and I’m going to check out the probiotics next.

Ok…so, in the last 2 days several things have happened…

1) Harry seems to have improved incredibly. Friday and Saturday were horrible, the week or so before that was not good, but yesterday and today have been so much better. We’ve done nothing different with him, other than he has slept more (we were in and out a lot, so he had a lot of chances to get to sleep in the car). Tomorrow we’ll be home more, so we’ll see how that goes…if I can get him to sleep somewhere other than in my arms. Sunday was exactly 2 weeks since we had him on the higher Prevacid dose, so maybe those last 2 days were what he needed. His bms today seemed not as smelly and more of a normal color (rather than the dark green/black stinky gas/poop he had until then). He is moving around still sometimes when he’s eating, and he’s still making those loud throat clearing noises in his sleep. We also switched him to Dr Brown’s bottles last week on Wednesday, I’m not sure if they’ve done anything, but his gas does now seem a little better.

2) My Pedi spoke w/ the GI and my GI wants to take Harry off of the PRevacid & put him on AXID 1 ml 3x/day and on Carafate. I was very disappointed to hear this and told the Pedi I didnt want to do that, so i’m going to call the GI myself tomorrow. I feel like going to Axid is like taking a step backwords that I dont want to do. The GI’s reasoning was that some kids get stomach aches from the Prevacid itself, so the Prevacid could be making him worse. I don’t agree–Dagney needed 30mg to feel better, so why would Harry be any different, especially if he showed the GERD so much earlier than her? The GI also wants us to schedule an Upper GI.

Considering his improvement over the last 2 days, I’m going to tell the GI I want to keep him as is for another week or so, and maybe add the Carafate. If at that point he isn’t good, we can try the Axid (or I’ll find a new GI!), with the stipulation that if the Axid doesn’t help or seems to hurt, that we go back to the Prevacid and possibly up it. I will schedule the Upper GI and I’m also going to look into the probiotics as well. Our GI was never happy that Dagney was on such a high dose, and said Harry is on a very high dose now & didn’t want to up it any more, it was the Pedi who put them both on it. Does my plan sound right, and would anyone else be disappointed with the GI?

dfb052009-09-21 21:36:44

[Anonymous]

Denise

I would be so disappointed in the GI, Axid is such a step back in my opinion. I like you approach. I seem to remember that Cooper didn’t improve until day 12 or so on prevacid so maybe Harry did need the full 2wks to start feeling better.

I like your plan and if your GI doesn’t agree when either I would find another one or just stick with your general ped and hope they continue to do what you ask. Good Luck, I am glad he appears to be feeling better.

[Anonymous]

Denise, I completely agree w/you. I wouldn’t even consider ‘trying’ the axid, but that’s JMO. 🙂 It does seem like a complete step backwards. Like Beth mentioned, if the GI isn’t willing to work w/u then I’d stick w/the Ped and get a new GI. Good luck and I hope the meds start working for him!

[Anonymous]

Thanks, ladies. I spoke with the GI nurse today & I’m more disappointed! I actually started second guessing myself. I told her I didnt want to go to the Axid, and felt it would be going backwords. I told her I’d schedule the Upper GI & asked if we could do the Carafate, but would prefer to stay on the Prevacid at least until I saw the GI on Oct 5th. The RN was actually suggesting we drop the Prevacid because the GI doc was uncomfortable with how high it was, but I refused that too. I asked her if she’d heard about research that showed infants metabolize the PPIS faster (etc) but didnt name Marcikids specifically, and she said they wait for extensive research to prove things and would rather “err on the side of caution” and prefer to keep the doses at 2x/day rather than the 3x/day, but then that some cases may warrant special circumstances. She said they wanted to make sure the Upper GI came back without any physiological problems, then would address if any medicinal changes needed to be done. I understand that, and appreciate that, and don’t want to do anything to my kids that they don’t need, but my poor litle guy is still in pain, and I know he could be helped if they’d be a little more open. I’m hoping once the Upper GI comes back ok (which I’m praying and assuming it will), I can at least get the Pedi to up the Prevacid dose like he finally did with Dagney once hers showed she was ok too. I wanted to ask for an email address for the Pedi GI so I can send the marcikids site info, but forgot, I was so upset, there are also limited Pedi GIs in the area, so I don’t want to unnecessarily piss anyone off and then have no where to turn, but then again, if they want to step him down off of the current dose of Prevacid or move him to Axid… I was able to get an appointment with another GI about 45 mins away on Oct 16th, so we’ll see what happens. I’m hoping we can get things straightened out and remain with the same doc and not have to start over again. I’m so disappointed right now though! (I’m also trying to find day care for when I go back to work, and that’s not going so well either!).

Thanks again, and any additional comments or suggestions or just support is always appreciated!

dfb052009-09-22 15:54:57

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