Posted By Posting
Apr 25, 2009
nikkid
Am I expecting too much?
Hi ladies. I live in the UK and would be really grateful for your advice. My son is now 4 months old and was diagnosed with reflux at a week old and started on zantac and domperidone. However, after several increases and only a brief period of relief he was put onto Prevacid. We saw improvements after 5 weeks but he was pulled off the Prevacid as the paed thought the diahrrea he had was caused by the prevacid. He's now on 10mg Prilosec which we split twice a day (he's been on this for 8 weeks), 1.2ml Zantac 3 x daily, 1.3ml domperidone 3 x daily, neocate formula and carobel thickener. Although he's not screaming 24 hours a day, he still screams once or twice a day and only naps 30 minutes every now and again. He used to want to feed all the time but for the last 2 - 3 weeks he's crying every time the bottle comes near him. I'm having to feed him when he's asleep a lot of the time just to get the formula into him. We are seeing a GI in 3 weeks and cannot get this brought any further foward. I'm spacing the meds 3 - 4 hours apart and giving the prilosec 30 mins before a feed. Our paed has washed his hands of our son's care. When we recently called to ask for his advice and whether he could have the prilosec increased he told us our son was on the maximum and if we were concerned, to go and see our doctor! I wanted to ask you whether I'm expecting too much from the prilosec? Do your babies still experience pain when on meds? Although my son is not screaming for the length of time like he used to, it's breaking my heart continuing to watch him screeching in pain still. His hiccups seem to be back, some days he's vomiting lots more although the vomiting was never really an issue, just the pain, and his breathing is wheezy and hoarse yet again. Although he smiles plenty, he seems very agitated and irritable the majority of the day. I would be grateful for your thoughts.
Apr 25, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Would you say that he was significantly better when he was on the Prevacid?
Apr 25, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Sorry, one more question. Why is he on domperidone?
Apr 26, 2009
nikkid
Hi Yes, I would say he was better on the prevacid. He had 3 weeks on the prevacid capsules which did absolutely nothing and then we switched to the fasttabs and split the dose into 2 and we immediately saw an improvement. However, that was 9 weeks ago, so am not sure whether it would be the same now. He's on domperidone as that is the protocol in the UK for treating reflux. They always use zantac and domperidone as a first shot. We did try removing the domperidone a few weeks ago, but found that he wasn't emptying his bowels as frequently and the vomiting increased.
Apr 26, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hmmm....seems like if you really saw an improvement with the solutabs it might be worth giving them a try again and just try to get him through until you see the GI. Then at least you would have that info for the GI - that possibly his reflux is well controlled with it but you have side affect of diarhea. Just a thought, I hate for your little one to be in pain for so long before you see the GI. Do you have malox or mylanta there? These also can be so helpful for pain.

So, if it were me, I would do zantac and prevacid solutabs until you see the GI and use mylant/maalox for pain.

Apr 26, 2009
nikkid
Thanks for all your advice. We don't have mylanta or maalox here. What is maalox and mylanta? I might be able to give something similar. I have been thinking about switching back to Prevacid for a while, just didn't want to change anything until I spoke to the GI in case they advised upping the dosage of prilosec and performing some tests first instead. It seems like paeds over here don't like being aggressive with dosages which is why we asked for the referral to a GI. Do you think my son is on a low dose of prilosec (5mg twice daily) or this is okay given he's also on zantac? How is your daughter Katie doing? She's a gorgeous little girl.
Apr 26, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Mylanta/Malox is an over the counter antacid and antigas medicine. It soothes their little tummies for the short term. Carafate would be a prescription super mylanta. I am unfamiliar with Prilosec dosing. WHen Katie was 4 months she was on 15 mg a prevacid and also Zantac.

You could do another post to survey was dose of Prilosec other kiddos are on.

Thanks for asking. Katie finally seems to be coming out of it and doing well. Of course, as you may find, as soon as you say they are doing well all hell breaks loose :)

Apr 27, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
How much does your son weigh? Zantac and domperidone (Motilium in Canada... not used in the US) are weight sensitive and the doses need to be adjusted as your baby grows. Prilosec (Losec in Canada) is not at 5mg twice per day is a good dose. However, we used Losec for a while and did not see any improvement. We switched to Prevacid as well but did not see results until we started using solutabs in combination with Zantac. If your Zantac is a concentration of 15mg/ml (standard in Canada) then he is getting 54mg/day which means if he is between 12-23lbs it is an appropriate dose right now. We found that the minimum dose didn't work very well for us because our daughter gains weight rapidly (due to comfort eating) so we were constantly trying to play 'catch up' with her dosage. We found that a mid range dose was the 'magic' for us. If he is vomiting more now I would also look at your domperidone dose (which could also be the cause of the diarrhea). What I have done in the past when questioning medications is called around to various pharmacies (they don't all give the same advice or even recommended doses... scary, I know) and then basically take what seems to be the most common answer. Obviously your baby is in pain and many of us here (myself included) have struggled with doctors who have 'washed their hands' of the situation or blown us off as nervous new parents. No matter what, trust your mommy instincts and do whatever you have to do to get your baby well, even if it means seeing doctor after doctor until you find the right one. It is heartbreaking to have a baby in pain - we've ALL been there! Just curious... why did you take your son off the domperidone? I have had my DD on and off the domperidone (mainly due to my insecurities about the medication and what I thought were behavioural problems possibly related to the med) but I've come to the realization that she needs it due to choking episodes...
Apr 27, 2009
nikkid
Thanks for your response, don't know what I would have done without the advice on this forum. My son weighs 14lbs. I telephoned the hospital today and spoke with the GI's secretary and explained the situation and am waiting on a call back. I'm praying they'll see my son a bit earlier. I agree, think the way to go is to go back on the solutabs as we seemed to have success with them before, they were also a great deal easier to administer. We took him off the Domperidone as he seemed to be suffering with pains in his stomach and were not convinced at the time it was actually doing any good. The paed also said it could be causing him stomach pains. However, once we stopped he started vomiting a lot more, choking and seemed more uncomfortable. What times of day do you dose your prevacid and zantac?
Apr 27, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Hi again! This forum is the best place to find advice, suggestions, 'me too' stories and just general empathy because it's not likely that anyone around you truly understands what you're going through... so welcome! We only give the Zantac twice per day and that does the trick so first bottle in the morning and last bottle at night. We mix it with 1-2oz of formula because it can be given with food and disguises the bitter mint taste. Then we give the prevacid solutab (only once per day) mid-morning as long as it's at least 2 hours from the zantac and ideally on an empty stomach. We also mix the zantac and domperidone together in the first and last bottles and we give it once mid-day alone (we give the domperidone 3 times/day). It's not easy giving all these meds, I know. So it looks like this: 7:00am zantac and domperidone in bottle. 10:00am prevacid solutab 1:00pm domperidone in bottle. 7:00pm zantac and domperidone in bottle. Those are approximate times. I can't say it enough, trust your mommy instincts. I tried to ignore mine but I was ALWAYS right....
Apr 30, 2009
nikkid
Thank you for posting and for your help. My meds schedule is roughly the same, apart from an extra dose of prilosec early evening and a nighttime dose of zantac and domperidone. I'm hoping that we might be able to at least combine the 3rd zantac dose with the others as he wont always have a bottle at 10pm and I don't want to wake him just to take his meds. I got hold of the GI's secretary and they've given us an appointment for tomorrow which is fantastic. Needless to say since my telephone call to them on Monday, for the last 3 days my son hasn't screamed - always the way! His feeding was still poor, but today he seems to also be taking his bottles better. His sleep is still a bit erratic but it's lovely to see him smile and not screaming with the pain. I'm hoping this continues. Could it be the prilosec finally kicking in after 9 weeks? Seems like such a long time to take effect if it is. It's always a worry isn't it, whether the screaming will take ahold again. How's Mallory doing now?
Apr 30, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
I had to laugh when I read that since you called the GI your son has been feeling better. That was always the case with us too! We'd be at our wits end and then go see the dr - baby always seemed better (for that day at least!). Good for you for pushing to see the GI dr earlier (Momma bear can make things happen!). Good luck with your appointment. Mallory still has feeding issues - it has been an ongoing battle since she was 2 months old (almost 7 months now). I know that she feels better with the meds because most days she's generally happier. Although when she starts to get grumpy I know that the Zantac is not working anymore and re-evaluate the dosage. There are days when she will 'fight' the bottle, chew on the nipple, bat it away and just play with it or refuse it altogether. Some days it's a struggle to get much food into her. I don't know if it's become a behavioural thing due to being in pain from the reflux for so long before we found the right combination of meds or something else but I can’t get the ped’n to do anything about it since Mallory continues to gain weight. You are the best judge of how your LO feels. They don’t call it the ‘reflux rollercoaster’ for nothing but just hang in there.
Check with your
doctor first!