Feeling so discouraged

[Anonymous]

Connor started on the Neocate and Prevacid on Monday afternoon/Tuesday AM. I thought we had seen some improvement on Thursday/early Friday, but starting yesterday around 4pm he’s been miserable again. Crying during feeds, crying basically all the time that he’s awake, etc.

I know that the Ped GI said to give it two weeks, but I feel like we should be seeing something by now. Or at least if he was feeling better, he shouldn’t be feeling worse again, right? I’m so worried that he’s going to be one of the very few kids who don’t do well on Neocate and then what do we do then?

I’m just so discouraged – I feel like I’m missing out on time with Owen and missing out on any enjoyable time with Connor. He’s so miserable I’ve only seen him smile a few times ever, and then I start worrying that there’s something wrong with him emotionally and that’s why he’s not smiling, etc. I know I’m leaping here, but I just want him to be healthy and happy and feel so cheated right now.

Ugh – I’m sorry to vent like this – it’s just a hard time right now. Does anyone have any similar experiences to this? What do I do if the neocate doesn’t help?

[Anonymous]

Hang in there! Laura, do you remember Sue (Alexis mom)? I think her second daughter didn’t do well on Neocate and they found something else that worked for them? Let me know if you know who I am talking about and if not, I will try to pm her to see if she visits anymore. She may know, but again, we did have some good and bad days until it really started getting better, so hang in there!!!! Still could be OK….

[hellbennt]

the prevacid takes 2 weeks to ‘kick in’ so if you have any zantac/pepcid/tagament/axid you can add that into the mix, just give 4hrs seperate from the prvacid…

here are some links I saved from sue:

(sue)Allergic to corn- ie no neocate: https://www.infantreflux.org/forum/forum_posts.asp?TID=9319&PID=81148#81148

(sue again, replying to gina- breastfeeding ingo to (TED)https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&PN=1

[Anonymous]

I am no help re the neocate issue. But I do want to tell you that I honestly can’t remember Cooper smiling until he was 4months old. That was when his formula and meds were finally right. And I can tell you that even though he cried pretty much for the first 4 months of his life, all he does now is smile! He is the happiest child ever… rarely cries unless he is really hurt or is sick and even then he really doesn’t cry like you would expect. Just wanted to try and give you hope that he will smile and once he does, he may never stop!

[Anonymous]

Thanks so much, Beth. This has been hard for me because Owen was always super happy, even when he was having awful reflux issues. He’d refuse to take bottles and scream bloody murder when we tried to feed him, but other than that he was a super happy kid. Now Connor is the total opposite – would eat all day and night if we let him, but screams bloody murder whenever he isn’t. What I wouldn’t give for a blend of the two of them!

Thanks for your help – that really does make me feel better.

[Anonymous]

I’m just having such a terrible day today. Connor won’t stop crying – it’s been a week now on the neocate and prevacid and while he’s had some good moments, it seems like we’re always just waiting for him to lose it. Today, it’s been bad all day. He’s still sleeping ok, although he kept waking in discomfort during his naps yesterday. He’s just miserable. I can’t take it – I don’t know what to do. His doctor said to give it two weeks, but then after the two weeks she’s gone until after the new year – so we have to wait until 1/8 for our appt. for any relief for him? His eczema is getting worse and worse and I can’t help but think it’s some sort of reaction to something – and I can’t get him to be comfortable.

He’s starting daycare in 5 weeks and I feel like he’ll be nowhere near ready at that point and they won’t take him if he cries all day long. I remember feeling like this with Owen too and it turned out ok but it seems like we’re just getting nowhere with him. I have no idea what to do.

[Anonymous]

I’m so sorry things aren’t any better! My DD took a good while being on both elecare and prevacid before we noticed a big change. It may be something you’ve already considered, so please forgive me if I’m being redundant…BUT…If his eczema is worsening, maybe it’s still related to MSPI. I know the solutabs contain both lactose and aspertame. Some babies can’t tolerate either of the two. Also, maybe his prevacid dose just isn’t enough for him. Maybe try increasing it and doing 7.5 in the am and 7.5 in the pm…w/zantac in between?! I really hope Connor starts feeling better!

[Anonymous]

I’m so sorry Laura. You mentioned the eczema. Is he on the solutabs? I may be wrong here (someone chime in if I am!) but I think they have lactose in them. Do you think he could be reacting to that?? We did the Prevacid suspension when Seth was that age and then the capsules and then solutabs.

I would definitely try to give him some Mylanta in between too.

Hang in there!!

[Anonymous]

Laura–I don’t have anything new to add. just a . And that the solutabs didn’t help Finn at all. We had to use the capsules and the buffer babies as soon as we could get it. I’m so sorry that you’re feeling ‘cheated’. I know exactly what you mean.

[Anonymous]

Laura, The eczema has me a little concerned too. I would also suspect that he is reacting to something… probably not the neocate, but, as someone posted above, there have been a few kids that couldn’t do the corn in it.

My guess is that he has two things going on: First, that his Prevacid dose just isn’t high enough and/or it hasn’t totally kicked in.

Secondly, that the small amounts of lactose in the solutabs are still bothering him. Perhaps looking into the capsules and buffer babies is a good next step.

Also, my two kids both had reflux and your description of the first refluxer vs. the second sounds like my kids EXACTLY! Ben was a screamer, but a little piggy and Claire (first born) was as happy as could be, but wouldn’t eat. I too wished over and over that I could just have a happy healthy baby! But, I’ll tell you, with all certainty, that they are both happy and healthy now, and, Once we got all the meds/food issues straightened out with Benjamin, life got so much better for everyone.

Hang in there.

[Anonymous]

The solutabs did make both of my boys much fussier and they could not tolerate them… once we got the right form of the med, then they both did much better as well.

Hang in there!!!!!

[Anonymous]

Thanks guys. Today is day 9 and it’s actually been a relatively good day, so far. First of all, he slept from 10:30 – 4:50 this am – which was amazing! He was crabby when he ate at that time, but did eventually get back to sleep. He’s had two feedings since and both went pretty well, and he’s had minimal fussing (at least compared to his normal days anyway!). I can tell that the reflux is still bothering him though, so my guess is either that the solutabs haven’t kicked in, aren’t working, or aren’t a high enough dose. I’m giving him zantac in the afternoon so hopefully that will help, and maybe we’ll see a change in a few days. Prevacid usually takes close to two weeks to kick in, right?

[Anonymous]

From what I’ve heard, yes 2 weeks. That’s great news though! Hopefully he continues to improve as the days go by. Also, you’re probably right in thinking that the dose may be too low. Most babies also need several doses throughout the day b/c of their metabolisms. Are you able to try increasing and doing 7.5 2x/day? Do you know what marcikids says would be his max dose? http://www.marci-kids.com/dosing.html#dosingchart I’d try doing what they suggest and see if he starts feeling/acting more content. If so, bring that info into your Doc.

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