Frustrated!!!

[Anonymous]

My ds is almost seven months old. He was diagnosed with severe reflux when he was one month old. He’s on Prevacid solutab two times a day, Bethanechol four times a day, and Caraphate four times a day. We started solids about a month ago and boy is it not going so well. The dr recommended feeding him solids three times a day since he seems to be starving even after each feeding. (He truly spits up at least half of what he drinks. We go through a min. of four outfits a day and up to 15 bibs. It’s awful!) He seems to do okay with applesauce and oatmeal. However, after each bite he sucks his thumb for a few seconds and then takes another bite. If I try to stop his hand from going into his month, he starts coughing and begins to whine. I’ve tried feeding him other things, but he whines while eating, sucks his thumb, and then pretty much spits everything back up. I’m feeling at my whits end. He’s gone back to crying A LOT. At this point I’m not sure what is going on. We went to his dr (which switch since his ped. is no longer practicing…darn it!) three weeks ago. She was suppose to refer us to see a specialist. Some how there was a mix up and now three weeks later we’re still waiting on an appointment to see the specialist. I am feeling frazzled! I want my ds to be happy and healthy, but I don’t know what to think about the thumb sucking and spitting up all of his food. Should I stop feeding him solids? If so, he drinks 8 oz. and still whines like he wants more. He’s still eating every two – three hours. Please help…

[hellbennt]

Welcome!

I have some questions: how long has he been on carafate? It is meant as a short-term solution, not as a long-term one…also, I’m not sure about the spacing out of all the meds, but you have to give the carafate seperate from the prevacid…

next question: how much prevacid total is he getting a day? are you splitting a 15mg solutab so he gets 15 a day? is he geting 30mgs a day? (splitting a 30mg or giving 2 15mgs)?

next question: are you giving the solutab on an empty stomach?

another question: what formula does he take? is there a chance he is intolerant to milk or soy? mspi can exacerbate reflux…

sorry for all the questions! I just want (everyone) to be able to help you and your son the best that we can!

I have a LOT more to say & (most of) it is here:

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

so glad you found us!

~laura

[Anonymous]

Thank you so much for responding to my post. My ds has been on carafate for about four months. I have been giving my ds the caraphate with the prevacid two times a day. Should I stop doing that? I give my ds Prevacid 15 mg solutab first thing in the morning on an empty stomach. But, most often at night, I give him the Prevacid 15 mg solutab right after he eats. The dr didn’t say to give it to him on an empty or full stomach. Should I try giving both on an empty stomach? We’ve tried several different formulas. For the past two months, he’s been on Enfamil AR. It doesn’t seem to work any better or worse for him. I’m just concerned that he’s still hungry after eating 8 oz. It just doesn’t seem to satisfy him. I hope I answered all of your questions. I would love it if you could help in any way. I thought things would be better by now, but they aren’t. Sometimes it seems like they are going back to where we were in the beginning.

[hellbennt]

I’m not sure of the spacing of the carafate & the prevacid, but I do believe they ‘cancel’ each other out…the carafate is a super-duper coating for the stomach- it’s meant to help the stomach/esophogus heal- I don’t think it’s ‘supposed’ to be given regularly for four months? when my son had it, we gave it at the time when his reflux was at it’s worst and it did help- but that was while we were working to get his reflux under control with meds- a high PPI dose and even zantac at the same time…

does your son ‘need’ the bethanechol? it’s for DGE (delayed gastric emptying). has he had a test for DGE? what would happen if you stopped the bethancol? just wondering as I type; I truly have no experience with it…

from the link I gave you above, look for ‘Prevacid 101’ – this will help you know how/when to give the prevacid…

more people should answer this thread (series of posts)…

hang in there,

~laura

[Anonymous]

My dd is on AR also but our gastro doc suggested adding more rice cereal to it so we add 3 teaspoons or so to a 6 ounce bottle. That has really helped to decrease the amount of spit up. We go through a ton of outfits and bibs also. I FEEL YOUR PAIN!

Also, I would give up on your pedi and call a pediatric gastro doc yourself and make an appt. That is what I did.

My dd was on carafate but it is supposed to be taken for 14 days and then 14 more days if needed. I don’t think it is meant to be given for so long but your doc should be able to tell you his reasoning on why he has given it for so long.

We are on prevacid twice a day too. She still spits up but does not seem to be as bad. I think the rice in the bottle helped more than anything.

Sure hope yall can find some relief soon. I would jump up and down until you can get an appt. Sounds like your ds needs it! Big Hugs to you and ds!

[Anonymous]

Hi,

Sorry to hear of your troubles. As a first step I think I would try to time that second dose on an empty stomach.

I’m not sure how many oz he gets per day but at one stage Alana was up to about 50 oz a day…some babies drink more some less.

My only suggestion re the solids, is that some of us have had more luck starting with veges rather than grains. The later can tend to be a bit tougher on the still immature system. Of course this does account for the thumb sucking and whining and stuff.

I agree that the paed GI would be a good step, sometimes you do have to take matters in your own hands…my paeds office was so glad when Alana’s reflux as under control because they got sick of me and my daily pleas for help (working in healthcare myself, unfortunately it is the people who persist that actually get my attention, because we are just so over worked…no excuses of course but I’m a realistic…I keep bugging people until I get what I need).

I hope you get some answers that help you and your little one soon.

[Anonymous]

Hi there. So sorry to hear of the troubles you and DS are having – but you’ve found the right place for help and support! My son Ben (now 2 & 1/2) was much like your son. He threw up/spit up constantly (I always carried an extra outfit for him and an extra shirt for myself whenever I left the house) and always seemed to have an insatiable appetite, eating at least 8 oz every 2 & 1/2 hours. He was 19 lbs at his 4 month check-up! Looking back, I think he was feeding so much partly to soothe his pain.

As well, I am a pharmacist, so perhaps I might be able to give a little advice about the timing of your son’s meds, etc. Laura is right about the Carafate. It coats the stomach, so if other meds are given at the same time, or shortly after, they will not be absorbed into his system very well. If he is getting the Prevacid at the same time, it is likely not working very well. It is recommended to give any other medications 2 hours prior to Carafate, to ensure they are absorbed before the Carafate coats the stomach.

Here are my thoughts/recommendations (and please talk to your doctor about this as well to get his/her input):

The Prevacid, in my opinion, is the most essential of your son’s meds, as it works by reducing the amount of stomach acid. With less stomach acid, there is much less damage being done to the stomach and esophagus during reflux (and more opportunity to heal) and much less pain as well. With less pain, we usually see happier babies who are able to eat and sleep more comfortably. Since his Prevacid is so essential, I would try to give it on an empty stomach, 30-60 minutes before a feeding, and at least 2 hours prior to Carafate.

Carafate is meant to help coat and soothe the stomach/esophagus in order to give it the chance to heal while you are waiting for a medication like Prevacid to “kick in” and reduce the stomach acid. It can be given as often as 4 times a day, as your son has been prescribed, but doesn’t have to be given that often in order to have a positive effect – especially if it is interfering with other essential medications. I would suggest reducing it to twice a day, spaced at least 2 hours after the Prevacid or at least 4 hours before a dose of Prevacid is due. (and please don’t just take my word for it – talk to your doctor or pharmacist) That way it will still help soothe his stomach until the Prevacid really starts working well for him, and won’t interact with it.

Bethanechol is sometimes used in reflux or DGE (delayed gastric emptying) to improve the muscle tone and help propel the stomach contents down into the small intestine. It is also best to give on an empty stomach, 30-60 minutes before a feeding, up to a maximum of 4 times a day. This too should be given at least 2 hours before Carafate in order to work best. Unfortunately, a common side effect of bethanechol is nausea possibly leading to vomiting. I wouldn’t necessarily suggest changing or discontinuing the bethanechol at this time, unless you don’t see any improvement after adjusting the timing/dosing of the Prevacid and Carafate.

I really hope this helps a bit! I’ll try to keep an eye on this post in case you have any questions/concerns. Good luck!

[Anonymous]

Thank you all so much for responding to my post. I was at my wits end yesterday. I called this morning and got an appointment with the specialist for Nov. 20th. I wish it could be earlier, but… I typically am a nice person, but now I’m going to have to be more in their face so we get results. I gave Alston the Prevacid on an empty stomach this morning and waited 30 min. before I fed him. Thank you for telling me about that. I will def. ask about the Caraphate. At first he was on the Mylanta, but the dr. changed him to Caraphate. The Bethanechol has just been prescribed about two months ago. Before that we had been on Reglan 0.5 four times a day. I can’t wait to see the specialist because I’m writing down my questions now. Thank you, thank you! Tonight I’m going to try adding rice cereal to his Enfamil AR. Hopefully that will help fill him up more. I am so glad I found you!

[Anonymous]

yay! glad you have an appt! i know it feels better to just have it. maybe if they have a cancellation they could call you?

hope giving the prevacid on an empty tummy will help.

[Anonymous]

I think I’d ask the doc first before adding cereal to Enfamil AR. The AR formulas have added rice starch, so adding more cereal can possibly lead to consitipation and even dehydration (because the baby will drink less getting full on the rice and starch).

[Anonymous]

I also would wait on the cereal. This made my lo reflux more severe and caused alot of stomach issues. Her Ped put her on this at first and then her Gi ped took her off the cereal, which helped alot. My little one takes Nexium 20mg and erythro 2ml 3x’s a day. Does anyone know if cherry mylanta is ok to give with Nexium? We tryed some solids the other day and she got verycranky several hours later.

[Anonymous]

One thing I have learned is that what works for one child may or may not work for another. Always ask your doctor before trying any suggestion.

[Anonymous]

Hey! I am just now getting to this, but just wanted to chime in… the thumb sucking after taking bites sounds EXACTLY like what my daughter did when she was an infant. I think what was going on, was she was refluxing the solids, but because they were heavier than the liquid, she wasn’t vomiting it out. It would just come up into her throat, so the thumb sucking helped her suck it back down. She would also whine if I tried to get her to stop. I think it was burning her throat, and she was trying to sooth the burn.

It wasn’t until she was more comfortable on a high dose of Prevacid that this behavior stopped.

Hopefully, you can get the answers you need from your doctor’s visit! Good luck.

[Author]

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