Infantreflux.org | New to the group and Really need some help!

This topic has 12 replies, 1 voice, and was last updated 16 years, 7 months ago by Anonymous.

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February 27, 2008 at 10:36 am #48631

Anonymous
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Hey everyone-

I have 2 girls, Kylie 3.5 and Hadley 7mos. They both were refluxy but no one diagnosed Kylie (they didn’t believe me and tossed it up to colic and actually told me to STOP BFing because it was “making it worse”!) and she doesn’t have problems really anymore.

Hadley on the other hand was diagnosed with it from birth. They actually kept her in the NICU when she was born because it was causing apena and she was turing blue and stopped breathing.

They told me I was an over producer and this was the reason for it. So we did one sided nursing, elevated while eating, sleepinh and basically all the time. (I pumped 3oz from one side the day she was born). Well, this all really didn’t help. She is a spitter and was a slow gainer. She is gaining well now but we are still having problems. They put her on Zantac at 8 wks and it didn’t help. she was on 3ml BID when we stopped it and switched to Lansoprazole 3mg 2.5ml QHS.

Both seemed to keep her awake or maybe she wasn’t getting enough? She keeps going through bouts where for weeks she sleeps 20 minutes, is up for hours, even all nights. I am so tired!! I just don’t want my baby to hurt anymore. She always arches, chokes, throws up and puts herself to sleep on her tummy.

Any suggestions? I skipped her Lansoprazole the other night to see what happened and she slept 12 hrs and took two 3 hr naps the next day. But last night she was back to up all night and is now not sleeping today? The Dr. just says to keep going with the meds but they arn’t helping. What do I do? Should I try the Zantac again? HELP PLEASE!!!

February 27, 2008 at 1:58 pm #48642

Anonymous
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Sorry you are having such a hard time. Hopefully you can find some help and support here!

Are you having the lansoprazole (Prevacid is the other name for it that you will see used here a lot) made into a liquid form by a pharmacy? If so, many pharmacies aren’t aware of how it needs to be made in order for it to be effective and stable. I’m a pharmacist myself, and wasn’t aware of these special requirements until my own children had reflux and I found the information here! Chances are pretty high that your prescription may not be very effective due to being made improperly. Also, Prevacid will work best if given on an empty stomach 30-60 minutes prior to a feed. As well, children tend to metabolize it much quicker than adults, so they tend to do better if they are given Prevacid 2 or 3 times a day. Another possibility is that her dose is too low for her age and weight. Here is a really good site that explains a lot about PPI medications (like Prevacid/lansoprazole) and how they should be given to children, and they even have a dosage calculator to help you determine an appropriate dose for your child’s age and weight. http://www.marcikids.com/

Just another question: What is your daughter eating (what formula, any solids, etc.)? Many of our little GERDlings have difficulties with milk and soy and some do better on a hypoallergenic formula like Nutramigen, Alimentum, or even Neocate or Elecare.

I hope we can help!

February 27, 2008 at 2:10 pm #48644

Anonymous
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Yes it is made by the pharmacy and from that site, she isn’t getting the dose they say. I just put a call into her Dr and I am going to mention the Zegerid. She is eating solids and is breastfed. She weighs almost 17lbs. If she wants me to increase the lansoprazol, I don’t know how in the world I would give her that 3x a day and the zantac 2x a day when there needs to be a 4 hr window between the two!! Which I didn’t know about that either and was giving the two together!

February 27, 2008 at 3:30 pm #48646

Anonymous
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Hello! Sorry to hear you are having a hard time. I think Sheri’s post about the meds is good, and don’t forget to check into how the pharmacy is making the compound. If not made properly, it won’t work or will only work for a few days before becoming unstable. As far as spacing the meds.. obviously, you won’t be able to do all of them.. Marci kids’ 3/day doses really assume that you won’t be needing the H2 blocker (Zantac) because the PPI’s generally work so much better. You will probably find that once she is on a good dose of a PPI, you can stop the Zantac altogether.. Or, maybe give two doses of the PPI (morning and night) and the Zantac in the middle of the day.

I also wanted to ask about your overproduction. Are you still breastfeeding? Do you have OAL? I did/do, and it certainly aggravated my son’s reflux. The block nursing is really helpful, but pumping can really cause more milk production, so you might want to avoid it if you can. I have some other ideas to get your supply under control and to help combat the OAL, if you are interested!

February 27, 2008 at 5:17 pm #48653

Anonymous
Inactive

Over active let down?

Yes I was told I do. But after the one sided nursing, have not done more than that.

So I called the Dr and asked about the zegerid. She said its not FDA approved for infants so she can’t prescribe it. She said she would do some research and call me back. Is this right?

February 27, 2008 at 8:02 pm #48662

Anonymous
Inactive

Check out http://www.marci-kids.com As far as I know, none of the PPI’s are FDA approved because who would let anyone test the med on their babies? But the website would have the best info on that.

As far as the OAL goes… have you noticed that your baby chokes during feedings? Does the milk still spray out when you let down? Does the baby bob on and off the breast? all this would be evidence that the milk letdown is bothering her. There are a few ways to combat this.. the best being the block feeding you are already doing.

I would fax the dr. with the marci-kids info. or give her the web address.

Good luck!

February 27, 2008 at 8:14 pm #48667

hellbennt
Keymaster

if you can get the prevacid compounded CORRECTLY then you don’t have to time it around meals. that’s (one of the reasons) why zegerid is so great- you don’t have to time it around meals. maybe you can talk to the pharmacist and ask her/him to PLEASE humour you & make the compound EXACTLY how you ask for it to be compounded- it’s worth a shot while you figure out if your dr will prescribe the zegerid

compounding from lori: https://www.infantreflux.org/forum/forum_posts.asp?TID=7855&TPN=1

February 27, 2008 at 8:56 pm #48668

Anonymous
Inactive

Yes she does do all of the things you mentioned. And she always has. She really only nurses on the right because of the one sided feedings, she prefers that side and the left really produces little milk now. She nurses on the slow side when she wants to fall asleep or use me as a pacifier and not eat.

I called the Dr and they don’t want to switch to that med. They want me to try the “solutabs” of the lanzoprazol at a higher does.

Are they any good?

February 27, 2008 at 9:42 pm #48671

Anonymous
Inactive

My daughter has been on the solutabs since she was about 3 months old. They have worked wonderfully for her. Those need to be given on an empty stomach about 30-60 minutes before a feeding in order to be the most effective. I have found it easiest to hold the solutab inside my daughter’s cheek with one finger until it has mostly disintegrated into little beads. Then I take about 5 mL of water in a syringe, and give her that to help wash it down. As they get older, you can just tuck the solutab into their cheek and let them gum it / chew on it until it disintegrates, then use a little squirt of water to wash it down.

I have heard of a couple little ones that may have reacted to an additive in the solutabs (perhaps the aspartame?) but it seems like the majority of babies tolerate them well. Hopefully you can get her on a good dose and start seeing some improvement! It can take up to 2 weeks to see the maximum benefit, but hopefully she will start to feel better and happier soon.

February 27, 2008 at 10:14 pm #48673

Anonymous
Inactive

I really hope she starts to feel better. She is a happy baby otherwise.

Now for a feeding do you mean solids or breast milk too?

She is a snacker (probably due to the reflux?) and nurses several times an hour. How do I get an empty stomach? And how ofter is your daughter getting it? Our Dr still said once a day.

February 28, 2008 at 2:20 pm #48695

Anonymous
Inactive

If you are interested.. there are a few things you can do to combat the OAL, and help her feed more comfortably. the OAL really can cause the reflux to worsen. Many moms nurse lying down so that gravity helps to slow the letdown, and some even find that laying back with baby on top helps as well. Also, I would also pull Ben off my breast when my milk letdown. I would let it spray into a cloth and then reattatch him after. He HATED this, but then he was able to nurse without gulping and choking. He was also able to stay on long enough to get to the hindmilk. Before doing this, he was getting too much formilk; his stools were green; and he had a ton of gas.

As for the empty stomach issue.. this is the main reason we switched to Zegerid. It doens’t have to be timed around meals.. I just found the timing aspect too tough with a breastfeeding infant.

February 29, 2008 at 10:05 am #48722

Anonymous
Inactive

My understanding is there isn’t a ppi that is FDA approved. You ladies can correct me if I’m wrong about that. Anyway, if Prevacid is not Fda approved and your dr. is willing to do that then I’m not sure why she would do the zegerid. Although many of us run into that and I have my ideals why it happens. Many of us have had to switch to another dr. if your current dr. won’t budge or go see a gi specialist. Our family dr helped us out a ton and I have heard other moms saying the say thing. Good luck.

February 29, 2008 at 12:06 pm #48725

Anonymous
Inactive

Fda has now approved Nexium for younger children. You can find the article on yahoo or fda’s website.
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