Back from GI

[Anonymous]

Well, we are back from the GI and I am a little disappointed by our visit. He seemed to suggest that since Seth’s reflux tends to be only really bothering him at night, it may be behavioral. I don’t agree because when he wakes up he is obviously in pain and you can hear the reflux.

He did say that we could try to add Reglan before bed which would help clear out his stomach more quickly and therefore help alleviate the night time episodes. I did take the prescription for it but am going to do more research before we try it. It is a very small dose. They have suggested Reglan before around the clock for him when he was an infant but I was always too scared to try it because of the side effects. I may post separately about this to see if anyone has any experience using it this way.

We also talked about testing and he said we could do a ph probe but it would only tell us what we already know and that the results would not change the course of treatment so we decided against it for now.

Bottom line, he said the reflux is something he has to grow and gain out of and it usually happens at around 27-29 lbs. (he has said this before but sorry I misquoted this in another post at 25 lbs. -27 lbs. I think). So, I am afraid if this is true Seth will be 2+ years old before we are done.

I guess the good news is he said overall Seth looked really good and to keep doing what we are doing. He is gaining steadily on his curve and appears healthy otherwise and has no developmental delays. So, I guess things could be worse but I was just hoping (like all of us) that he would give me some kind of miracle pill to make it all better….

Thanks for listening….

[Anonymous]

Tiffany

Sorry you were disappointed… i guess that you could try the Reglan. Some people have done it successfully. It may really help. Matthew was strange because he never really had episodes at night, and really only during daytime… so every child is different!

Glad he is gaining on his curve — that is what matters ultimately!!

[Anonymous]

Sorry the appointment didn’t go so well. Like Matthew, Marisa always
was worse during day – which I know is strange. His claim of it being
behavourial is odd to me.

Don’t know much about Reglan so hopefully someone else can provide more insight there.

I’ve never heard that before about growing out of reflux at a certain weight. Is that really true?

[Anonymous]

Sorry he wasn’t more helpful. I wonder why the Prevacid isn’t controlling his pain.

Maybe you could ask to switch to Zegerid. Zegerid is so much easier to use anyway.

The reason I am suggesting a switch to Zegerid is because I’m pretty sure Myles has some DGE and because of that I wonder if the Prevacid is working for him as well as it could. It supposed to be taken on an empty stomach, but do babies with DGE ever really have an empty stomach?? I think Myles’ DGE is pretty minor and he is much better on the Prevacid than he used to be, but I really think he’d be even better if Prevacid didn’t have to be taken on an empty stomach. Does Seth have DGE? If he does, I’d ask to try Zegerid first before trying the Reglan. It’s possible he’s not getting the full effect of the PPI becuase maybe his stomach is not empty enough when you give it to him. With Zegerid that wouldn’t matter.

[Anonymous]

Thanks Thais. BTW, love the name Matthew- it is Seth’s middle name!

Karen, the behavior comment was odd to me too. I believe his reasoning was since he seems to only act out at night, maybe he just wants his mommy or daddy (attention) and he knows screaming will get it. I would maybe accept this if I did not hear the reflux and the fact that he also wakes up in pain when he is in the guest bed with one of us not just when he is alone in his room so it just doesn’t make sense.

Christine, Seth has never been tested for DGE. Good point though about the Prevacid. I have considered asking about Zegerid before but really thought we were almost done with this and it didn’t make sense to switch now. Maybe I should think about it again..

[Anonymous]

Sorry to hear about the visit Tiffany! Hailey too has always had bad reflux at night, even after switching to her new bed! How is Seth doing with his? I certainly hope these little ones outgrow their reflux sooner than your doc predicts- Hailey will be 3 before that ever happens. If it helps at all, I too have a big problem letting Hailey scream, especially at night! When I hear her scream out in pain or reflux and she starts crying I can’t leave her. History has proven that in her case, leaving her scream doesn’t help anyhow! (Last night she was up screaming all night so boy can I relate!) Hope things improve for Seth soon.

[Anonymous]

I’m sorry that the appointment was so disappointing. Like several others, I think that his behavioral comment is really strange. Kaelyn’s reflux was usually worse at night and now that it’s under control, her only breakthrough episodes happen at night. Also, my reflux causes me a lot more issues at night. And I’m definitely not waking up looking for attention (especially since dh usually murmurs something that is supposed to be comforting and then rolls onto my side of the bed when I get up because of a bad reflux episode).

[Anonymous]

Lori, sorry to hear the bed is not working for Hailey as well as you hoped. Seth woke up in his too last night but the reflux did not seem as severe and he did not get any Mylanta before bed so it’s hard to tell. DH put him back in the guest bed with him afterwards so we could get some rest so it seems we are back at square one….. I was honestly wondering if the bed was a wise investment but now that we have heard the reflux may be with us a while longer, I am glad we went ahead and got it. About the weight/reflux correlation, I guess we’ll see if his theory proves true but he did tell us that it is a catch 22- the fatty foods you may be inclined to feed them to put on weight make reflux worse so you have to find a good balance. On a side note, I noticed Hailey is on Goodstart- I am sure you have ruled out MSPI and I missed it but I wanted to mention it just in case. Have you ever tried Nutramigen or Alimentum to see if it made a difference with her feedings?

Kim, thanks for the laugh although I am sorry to hear you suffer from reflux too!

[Anonymous]

Hi Tiffany –

I am so sorry to hear this – I know how awful it feels when you get yourself excited or hopeful that an appointment is going to give you the magic answer and somehow that doesn’t come true. Did he think it could have anything to do with what he’s eating or was the behavioral answer all he had to say? I wonder if at this point it would be helpful for you guys to start taking out anything that could be possibly bothering him and do a kind of elimination diet to see if it’s food related? We’ve thought of doing that with Owen when his nightwaking gets bad, but so far with him it seems to be mostly teeth related. Are Seth’s molars or eye teeth coming in or does he have them already? Owen’s molars really disrupted everything for him – he didn’t eat, was up all night – and it lasted quite some time.

I wish I had more ideas for you. I’m sorry that this is so hard – you must be so tired of all of this!

[Anonymous]

Hi Laura, thanks for the support.

The GI didn’t really offer that much, he just kept saying how he is gaining and looks good and that the reflux is just something he will have to grow out of (we were starting to worry that the reflux was secondary to some other problem). He thought the Prevacid dosage was adequate but did say we may could try to give it all at night instead of splitting the doses. I even feel like he only suggested the Reglan because we weren’t going out of there without something new to try although I doubt we will use it.

We really do like him and he has been great to us so I guess I was just disappointed he didn’t offer more but on the other hand, it’s nice to know he doesn’t think Seth’s case warrants concern either.

He did say certain foods do aggravate reflux even if there is not an intolerance. I also talked to his pharmacist last night when I had the Prevacid refilled and she asked if certain foods made it worse too. I have thought of trying to eliminate everything and start over but it would be so hard to do now. I was keeping a food dairy but never pinpointed any one thing.

Seth is teething, (seems like he has been since he was 4 months old!) drooling like crazy, so that could be it as well. He is getting one on the bottom and top but the molars and eye teeth are in.

I guess we will just keep hanging in there…

Mom2Seth2006-5-2 13:28:30

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