Long road ahead?

[Anonymous]

Hi mommies,

Sophia is on day 11 of Prevacid today. Around day 6 I was convinced that the medication was working. She was so happy and seemed to have really limited problems with the reflux. Then on day 8 and 9, it was absolute hell in our house as the reflux seemed to be 10 times worse than it had ever been.

(Sigh)

She had an upper GI on Tuesday, during which she refluxed immediately. The Dr. administering the test said she had “severe” reflux. Our pediatrician’s office called that afternoon and confirmed the diagnosis and said she would probably end up with more medication and/or increased dosage. She’s currently on 15mg of the prevacid and is 8 weeks old.

We still haven’t been to a ped GI, as our pediatrician seems to think this is a very common problem that they can treat without a specialist. I’m starting to think that maybe this is a more intense problem than originally thought. Did any of you go against your ped’s recommendation and seek out a GI?? I’m just so nervous…I love our ped and don’t want to make her angry, since this is someone I’m going to be seeing a LOT over the next few years. But I can’t watch my baby scream in pain and she’s not here every night at 7pm when Sophia starts screaming for 2 hours. What to do??

Also, I know I shouldn’t let this get to me. But, all of our friends and family keep asking me if we’re going to switch to formula to “help” her. Because I’ve already taken all dairy and meat out of my diet, this seems to be extreme and maybe I should just switch to a soy formula to help her out. I’m so tired of explaining why breastfeeding is so much better for her and that she probably has MSPI, in which case, the soy formula would be worse. I feel like people think I’m doing something that is making her worse, instead of the best possible thing I can do for her. I already had pushback when I initially decided to BF and it seems like everyone just wants me on the formula wagon. Argh!!!

Anyway…not sure if any of you have experienced anything similar to one or more of my issues, but it feels good to get it out there. Hope you’re all doing well with your little pumpkins!

Andrea

[Anonymous]

Hi Andrea,

I’m sorry to hear things are really rough for you and Sophia now. Just a few thoughts….

I’m not sure why you saw an improvement and then a relapse already on Prevacid, but I would stick it out. I don’t think you can really make a judgment either way til you give it at least 2 full weeks (for my older son it was more like 17 days before we saw the full effect). Also, is Sophia on the solutabs or packets? If so, are you giving them on an empty stomach and then following up with a feeding 30-60 minutes later? I think that 15 mg for an 8-week old is probably too low of a dose, especially if her reflux is severe. My son Nathan never really got any relief til he got up to 30 mg somewhere around 2 1/2 months old (REALLY needed it sooner). Have you checked out http://www.marci-kids.com to see what dosage they recommend? Another thing I’ve learned is that the Prevacid solutabs contain lactose (allbeit a very small amt), so we switched to the Prevacid powder packets (no lactose) for my son. I know it’s rare in infancy — but both my boys have been milk protein intolerant AND lactose intolerant, so you might want to try that (since you mention you’re off dairy). It helped Nathan.

For my Nathan to have relief, it’s taken not only a high dose of Prevacid but also a very strict diet on my part. Did you see any improvement with cutting out dairy and meat? Have you considered Dr. Sears’s total elimination diet to see for sure what might be bothering her? Before I would stop nursing, I would get her on a high dose of Prevacid, then try the elimination diet if she’s still having trouble. That way you know you’ve done everything you could do. Try not to let other people bother you about switching to formula — only you can make the decision. Believe me — I’ve heard it from my mom, my in-laws, even my husband (only because he genuinely hates to see me on such a restricted diet), but I’ve stuck with it because I’ve seen a huge improvement and I feel like poor Nathan would be a wreck on formula (or we would go broke on the kind of formula he would probably need). Anyway, it’s a bit of a lonely decision sometimes, but go with your gut and whatever you decide, let it be because that’s what YOU want to do.

About the doctor, we haven’t seen a GI for Nathan because the waiting list in our area is so long. And honestly, I was pretty sure if I could just get him on the high dose of Prevacid, we would be ok without a GI (we don’t have any weight gaining issues, though, so I might feel differently otherwise). But I can tell you that we switched pediatricians 3 times before we found one who will give us the Marci-kids dose of Prevacid, and I had to leave one office that I really loved. But who knows — you may find one who is even better — I did!

Good luck to you, and sorry this is so long! Keep us posted!

[hellbennt]

I agree with what paula says!!!

one more thing: if you have any zanac (or axid or tagament or pepsid) I would add that in, too, until you get the meds ‘right’

make sure to give it 4 hrs seperate from the prevacid- I would give the 10mgs per kilo of zantac Zantac dosing: https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

or, if you have pepcid here’s

Pepsid dose (liquid): 8^th post down: https://www.infantreflux.org/forum/forum_posts.asp?TID=9295&PN=2

[Anonymous]

Listening to your post makes me feel like I am typing the message. My ds is six months old, but I remember him at eight weeks old. Like your dd, my ds has severe reflux. It hasn’t gotten any better and the meds aren’t working great, but at least he isn’t screaming out in pain. One thing you might want to ask the dr about is Caraphate. It is a lot like Malox, but stronger. It could be that her little throat is red and raw from the acid coming back up. My ds takes 1.0 ml of Caraphate four times a day. If you want to try, your dd can have Malox four times a day (1.0 ml). It will help coat her throat. So, the Prevacid may be working, but her throat could be yucky. I hope this helps! I’m at wits end and would love a magic cure for my little fella! Our next step is the specialist. I’m talking to the dr on Monday about it.
Take care!
Jennifer

[Anonymous]

Hi there. Sorry that things are so rough. I agree with the others. I’d stick it out with the PPI, and if that doesn’t work, then I’d ask for a higher dose. Also, I don’t know much about the elimination diet, but maybe others who do can chime in on that one. About switching to formula, you have to do what’s right for you. But I did want to say that we eventually stwitched from BF to soy thinking that it would be our answer, and it wasn’t. In fact, it was worse b/c breast milk is supposed to be easier to diegest. In the end, you do what’s right for you, but I just wanted to let you know that formula wasn’t our saviour. There are special formulas out there if you do decide to go that route in the end, but as I said, I know that there are some moms on this site who have done the elimination diet and figured things out that way. In the meantime, can you try some mylanta supreme before feedings and see if that helps. About getting a GI, I’ve really learned through this whole experience with Hailey, that you need to fight for what you believe in. Reflux might be “common”, as in GER is common, but GERD is not, and it’s not normal for babies to suffer like that despite what any doctor says. I hated when doctors used to tell me that, and if they said any such thing, or told us that we just had to wait for her to outgrow it then I never went back. I know this sounds harsh, but I figured that if this was a problem that Hailey was dealing with then we needed a doc who was going to be on our side, and who didn’t belittle the situation, and who would try to help us. We went through tons of different doctors until we got Hailey on the right dose of meds and got the testing done that we needed. I’m writing this late at night, so I don’t know what the tone sounds like. If it sounds anything other than supportive, I apologize. I know how hard it can be. I just think that it’s important to do what you think it right. So even if your doc doesn’t think that you need to see a ped GI, if your doc isn’t taking you seriously, then push for whatever help you want. If you let us know where you’re located, then maybe someone here can recommend someone for you. Good luck.

[Anonymous]

Hello,

I just want to give you some support regarding breastfeeding and meeting resistance from family or friends…

I have bf all 3 of our refluxers, and every time I have had comments from my MIL like, “Have you tried switching his diet?” “Well, you’re certainly braver than I am!” or “Are you sure the breastfeeding isn’t causing more problems?”

I did TED too, and it didn’t help a thing! To me, if TED doesn’t help anything, it’s probably just reflux and not a food allergy or intolerance. I don’t think it would make sense to switch to a hypoallergenic formula if TED didn’t solve the problem.

Hang in there with the breastfeeding if that is what you wish to do. Don’t let others discourage you (easier said than done). Before you know it, your baby will be doing much better especially if you can get the medication dosage right.

I will tell you that we have kind of a weird case in that the Prevacid didn’t help our son (even on the maximum dose), and TED didn’t help. Nothing really helped except time. It was almost like he just had an immature digestive system, because once he reached 6 months old he was a new baby.

I know how hard this is for you, because I’ve been through it 3 times. It WILL get better I promise. I know that doesn’t help you now, but maybe it will give you hope. There were times when I was counting the days (literally) until Caden would outgrow this. He has had the worst colic of all our kids, so it has been really tough. Now that he is almost a year old, things are so much better. He still isn’t a great sleeper, but that may just be him…I don’t know if reflux is the problem anymore, because he is so happy during the day and takes decent naps (2 hour).

If anyone gives you a hassle about breastfeeding, you can share with them that it doesn’t really make sense to switch to formula when removing all potential allergens from your diet didn’t help the baby. It is most likely just reflux and will be outgrown in time.

Good luck!

[Anonymous]

Hi ladies,

Thanks for all the information and the encouragement. I’m taking all of your feedback to heart and going to try the recommendations you all have. I cried reading all of your responses, because it’s so nice to know that there are other mommies out there with the same problems who are actually surviving and getting things figured out for their little babies. Or, struggling through just like me. I do think I’m going to find a specialist…I’m in AZ, so any good recommendations would be great!

Emily – thanks for the encourgament about BFing. Just yesterday, I had someone ask me if I’d tried colic tablets for Sophia’s reflux. I wanted to laugh out loud because yes, I tried them… As if that would actually solve our problems! The same person went on to say that her baby had reflux and as soon as she stopped BFing it was gone. So maybe I shoud try that. Argh!

Lori – you gave me the encourgament that I need to demand what I think is best for my baby. Can you be on speed dial when I let our ped know that?!? 😉

Jenn – thanks for the tip on Caraphate. I have no idea what it is and how to get it, but I will find out. You are exactly right that her poor little throat is so sore. 🙁

Laura and Paula – thanks fpr al the information you provided. You ladies are incredible!!

Thanks again mommies…I’m so glad I’ve found you!!

p.s…Sophia has slept in her Tucker Sling for 2 nights in a row from 8pm to 1am. And her daddy and I slept too!! This thing is a God-send!!!

[hellbennt]

yay! for some sleep!

there’s a ‘breastfeeding’ section here, if you read through/scroll down:

https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

& babywearing SAVED us https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

keep us posted!

[Anonymous]

Andrea,

I didn’t get to read all the responses, but can say I was as many of the women on here in your shoes. It does get better as both of my boys are now reflux free. As for the gi, with us I decided to try a gi and got nowhere. Actually the gi told me to stop bfing and boy am I glad I didn’t listen to him. I ended up going back to my ped and giving them all the marci-kids info which at first was given back to me. I then had Dr. Phillips from Marci-kids call and finally got results. So, in my experience it was better to stick with the ped. As for the bfing, I was in the same boat, but I had already had another refluxer that I didn’t bf and saw that the formula didn’t help. As a matter of fact bfing my second was soooooooooooooo much better than the formula. There are enzymes in it that help the reflux. I know it may not seem that way, but it’s true. I also heard recently that it is better for bm to come back up than formula. Which I can say that my formula feed babies teeth are horribly yellow and my bf refluxers teeth are beautiful white. Not sure if there is a connection there, but it’s possible. Bm is always best, but especially for refluxers. Trust me when I say my bf baby did so much better than my formula feed baby. It became such a comfort for my second. Last formula is so expensive and well bm is free. For some reason older generations think formula is better and I guess that is because that is what they were taught, but we now know better. All that to say, keep up the good work. You are most likely going to have to deal with many more comments like those and you will have to nod your head and go about what you were doing. Everyone wants to help, but they just don’t see that they are making a mother that already feels guilt for something she has not done feel worse. I think we all feel that we have in some way done this to our babies wheather it be something we ate in pregnancy, our milk, whatever, but be assured you did nothing wrong. You are an amazing momma and any time you feel other wise you get on here and let us know about it and we will send you hugs.

It does get better.

[Anonymous]

I’m glad to read this and see that you’ve been getting some sleep!!!

As for recommendations, I believe that there’s a good GI team someone mentioned to me in AZ. I’ll check it out and get back to you…

HUGS.

[Author]

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